YOUR Summer 2021
Lockdown lifelines
How Robyn’s family got through
Regulating emotions
Plus
Gardening schemes, financial planning, and learning how to ride a bike
Strategies to help with distressed behaviour
Eating disorders
Getting autismspecific support
YOUR Summer 2021
Financial planning
34
Emotions advice
26
EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron and James Boosey-Still 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 Summer Vol 55, 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.
“Being autistic is just being me”
Contents What’s new?
A round-up of the latest news
Designing a GP health check
20 04
Green shoots
22
08
Regulating emotions
26
How to...
32
Planning for the future
34
Notebook
39
Readers to the rescue
42
I’m a... cake decorator
45
Newcastle University research
My diagnosis
Sandra’s son was diagnosed aged two and nine months
11
Gardening work schemes
How to help children
...teach your child to ride a bike
Coping in the pandemic
12
Financial advice
Eating disorders
16
Things to read, do and see
Robyn shares her family’s story
Dr Pooky Knightsmith on anorexia and autism
Ashley Storrie
The star of new BBC Three comedy Dinosaur chats to us
Talking devices
20
Robyn Lee cooks up a storm
autistic and eating disorder” 18
“It isn’t unusual to be have an Andrew Edwards
Summer 2021 3
What’s new?
Get in touch!
Your round-up of the latest news and views
Thank you for supporting World Autism Awareness Week! This year’s World Autism Awareness Week was a big success, thanks to our supporters. It was amazing seeing so many autistic people and their families fundraising, sharing stories and helping people understand more about what it’s like to be autistic.
Clare Ryan celebrated with seven days of fancy dress tours around her village, raising nearly £1,000.
Ben Watkins and Noah walked 20 miles in seven days as part of Oak FC’s 500-mile challenge, which raised more than £3,300.
So far, our Super 7 Challenge has raised more than £239,000 – a truly astounding figure that will help us to continue our vital work. There were 5,700 downloads of our school resources, 4 Your Autism
Well done to Emma and hundreds of other people from our adult services who took part in our Spring Forward Challenge. They walked an incredible 62 million steps – 26,000 miles – more than the Earth’s circumference.
Michael and Paul AtwalBrice rode seven miles with sons Levi and Lucas.
helping to increase autism understanding in schools. Feeling inspired? Our Spectrum Night Walks are back across the UK on Saturday 21 August. It’s a chance for people to increase public understanding
Roz hit all the high notes with her musical take on her Super 7 Challenge, by having a Super 7 sing-along!
of autism and to fundraise so together we can continue to create a society that works for autistic people. Save the date and join the walk at www.autism.org.uk/ spectrumnightwalks
News
A tribute to Dame Cheryl Gillan MP Dame Cheryl Gillan MP, Chair of the All Party Parliamentary Group on Autism (APPGA), died in April after a long illness. Our charity worked closely with Dame Cheryl for many years, starting with her campaign for an Autism Act in England in 2008-09. The landmark law is the only one aimed at supporting a particular group of disabled people. It requires the Government to have an autism strategy in England. Dame Cheryl led work across all the political parties on the many issues faced by autistic people. Those who attended APPGA meetings will remember her welcoming style. We are grateful for her support on so many crucial issues, from diagnosis waiting times, to teacher training, employment, mental health and autism understanding. Our Chief Executive, Caroline Stevens, said: “Dame Cheryl Gillan was a tremendous force for good for autism. Though we have so far still to go, over the past decade we have come so far in terms of autism understanding and support. It would look very different if we hadn’t had Dame Cheryl by our side in Parliament.”
The Autism Show Webinar Week, 14-19 June 2021
This year’s Autism Show has been postponed to June 2022 due to the pandemic. In its place there will be a Webinar Week running from 14-19 June 2021. National Autistic Society members receive £5 off when booking by entering the code TASWW21. For more information, visit www.autismlearns.co.uk/the-autismshow-webinar-week-2021
Latest employment stats
Just 22% of autistic adults are in any kind of employment, according to new data from the Office for National Statistics. This shocking figure is even lower than previously suggested in our surveys. The Government needs to make sure the upcoming autism strategy – and the national disability strategy – set out clear actions to improve employers’ understanding of autism. Read more at www.autism.org.uk/employment-gap
Donate with Virgin Red
Dame Cheryl at the launch of our Autism Employment Gap campaign in 2016
Members of Virgin Red, Virgin’s new rewards club, can earn Virgin Points on their everyday spend and choose to donate them to support our charity. Every 1,000 points donated will be converted into cash. These vital funds will be used to provide support and create a society that works for autistic people. Find out more at www.virgin.com/virgin-red/ spend-virgin-points Summer 2021 5
News
New post-diagnostic support in Scotland We have launched a new PostDiagnostic Support Service in Scotland, designed for young people aged 12 to 18. It aims to empower autistic young people and their families by providing
information and support after a diagnosis. Young people are helped to understand and embrace their identity by exploring topics such as understanding autism, managing
anxiety, social skills, and more. Each group meets weekly to discuss a topic and take part in team-building activities to improve confidence and reduce social isolation. After six weeks, the young people will be supported as they move on to other activities and services we offer. Funded by the Scottish Government through the ‘Different Minds’ programme, the service is delivered in partnership with other organisations, including Scottish Autism and Autism Initiatives. While most people who join have had a recent diagnosis, we will consider those whose diagnosis was more than two years ago. For more information, or to join, email: ScotlandSocialGroups@ nas.org.uk
Autistic people to be included in NHS mortality review programme The NHS has announced that autistic adults will be included in a new and expanded learning from life and death reviews programme (LeDeR), which aims to improve health and care services. The LeDeR programme was set up to look at why people with a learning disability often have poorer physical and mental health than other people, and why too many people die earlier than they should, including from things that could have been prevented. The programme will now also consider autistic people’s lives and the circumstances that led
6 Your Autism
up to their death, in order to make recommendations about changes to local services. This is really important, given the huge health inequalities many autistic people face, and something for which our charity – and many others – has been campaigning. All notifications of a death of an autistic adult or an adult with a learning disability will now receive a review by a local LeDeR team, which will include talking to their family, their GP or at least one other person involved in their care. Read more at bit.ly/mortalityreview
Play our lottery for your chance to win £25,000 every week For just £1 a week you will be entered into our draw every Friday!
Join online now: autism.org.uk/lottery Or call our lottery hotline: 0870 055 2291 Help us transform lives, change attitudes and create a society that works for autistic people.
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
iStock .com / Courtney Hale
Research
Designing a GP health check Researchers at Newcastle University are working with autistic people to create a new autism-friendly GP health check. Helen Taylor, Colin Wilson, Jeremy Parr and Barry Ingham, from Newcastle University and Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, explain more Autistic people are, on average, more likely to experience poor health than people who are not autistic. Some autistic people do not seek healthcare because health services do not provide the adaptations they need. Access to healthcare was identified as a key priority by autistic people and relatives at Autistica’s Summit on Autism and Ageing in 2017. Our research aims to address this priority by designing and evaluating a health check for autistic people for use in NHS primary care. If you are aged between 40 and 74, you will be invited for a free NHS health check every five years. 8 Your Autism
The research was designed in partnership with autistic people and their relatives, and includes autistic people, relatives and National Autistic Society representatives as part of the research team.
Study findings
The first part of the study sought to identify barriers and facilitators to healthcare access for autistic people. We reviewed existing research on this topic. Then we undertook a national survey with autistic people, relatives and health professionals to explore autistic people’s health needs, health service use,
Research
It would be good to have regular check-ins so you can speak about any concerns that you have, rather than them building up. That can cause anxiety within itself about not wanting to go if something has become so big. Research participant and views on health checks and adjustments needed. We also ran focus groups with autistic people and relatives to explore their experiences of receiving healthcare, and interviewed health professionals to understand how they provided healthcare to autistic people. A number of barriers to accessing and delivering healthcare to autistic people were identified, such as the sensory environment of healthcare services, and the knowledge and attitudes of health professionals. Adjustments to healthcare practice are needed to facilitate access. There is support for regular health checks for autistic people. The second part of the study aimed to further explore autistic people’s views about a health check for autistic adults, and develop a health check that addresses their expressed needs and preferences. We surveyed 461 autistic people about their views on a health check; people were contacted through the Adult Autism Spectrum Cohort-UK. We also facilitated groups and interviews with more than 50 autistic people, people with learning disabilities, carers, and supporters and health professionals, to develop the health check. Most autistic people (83%) thought a health check should be offered to all autistic people. There was more variability about the details of how a health check might be offered. Most people thought staff training on autism (90%) and delivering health checks (80%) was very important.
People agreed the health check should cover physical and mental health and wellbeing, collecting information beforehand was beneficial, and offering adjustments to standard practice was important in supporting healthcare access. Our findings show that autistic people are positive about a health check. We have an understanding of what might enhance or reduce the health check’s acceptability – this has guided its design. The health check includes a pre-appointment questionnaire, which asks about communication and sensory needs, general health and wellbeing, and what things might be needed to support the person at their health check appointment. We have also developed a training package about autism and healthcheck delivery.
What happens next with the research? We are now about to start a trial with GPs to find out whether the health check is acceptable to autistic people when used in NHS care, and whether it leads to improved health. For further information about this research and the upcoming trial, please visit our website: research.ncl.ac.uk/ autismhealthchecks.
Autistic people have co-designed and are co-delivering this research – meaning it’s directly relevant to people’s lives. Professor Jeremy Parr and Dr Barry Ingham, Study Leads
My Health Passport is our resource to help you communicate your needs to doctors, nurses and other healthcare professionals. Download it at www.autism.org.uk/my-health-passport Did you know that the NHS Long Term Plan includes autism training for all NHS staff? Learn more at bit.ly/NHS-plan Summer 2021 9
My child’s diagnosis
“Find out what your autistic child loves” Sandra’s son Genesis was diagnosed aged two and nine months
Genesis got diagnosed early. I wanted to go back to work, so I asked a childminder to look after him. Looking back, I think she knew, but thought it wasn’t her place to say. So she said: “Has he checked any of the milestones?” and I said: “The milestones; what are they?” She told me you go online and see where your child’s at. At two, Genesis wasn’t talking or even babbling. He wouldn’t answer to his name, he would sit there and hum. I went to my doctor, who said Genesis was still really young. But I kept thinking about the milestones, and insisted on seeing a speech therapist. They said: “We don’t see kids until they’re four,” – but I’m very persistent. In our session, the speech therapist said: “Ready, steady, go” to Genesis. On the “go”, she spun a ball and Genesis showed some reaction to it. By the third time, he said “go”. I was in shock. That was the first time I had heard him speak. The therapist told me: “You have to talk less,” and I thought, oh my goodness, I’ve been talking too much.
See Genesis’ SpongeBob paintings in Gallery 4 at: bit.ly/Harrow-art Hear more from Sandra at bit.ly/ SandraandGenesis Call our Parent to Parent Emotional Support Helpline on 0808 800 4106.
I started using short words and bought shiny toys and anything that made a noise. When he heard the toy, he would turn and look at it. I’d move it around the room and his eyes followed, and he’d smile. That’s how I got him to communicate a little bit.
Finding a way in When Genesis was first diagnosed, I burst into tears. I needed to find out how I was going to look after this child, because I didn’t have a clue about autism. Then I made the mistake of going online, and started to cry, thinking – he’s never going to understand what ‘funny’ is, he’s never going to talk. My paediatrician told me to find out what my autistic son loved, and that would be my way in. I call it his ‘sweet spot’, and Genesis’ was music. He would sing all the TV adverts, even the words. The speech therapist said he liked the sound and musical tones. Now he plays piano and sings with perfect pitch. Then he got into drawing because it calmed him. He’s done 60 paintings of SpongeBob! I’ve got a letter from the cartoon museum, where he took a course. The tutor said he’d never seen an eight-yearold who could draw like that. I’m a different person now. When I was first told of his autism, I thought, how do I care for him? Now, Genesis has two things he loves – art and music. I look forward to what he’s going to do next. Summer 2021 11
Real life
“It takes time to get back into a routine” Robyn talks about the differences between her autistic sons. She explains how her family have coped in the pandemic – with the help of their allotment and local branch – and how they feel about returning to normality
I’m Robyn and I live in Tilbury, Essex, with my partner, Matt. We have three sons: Elliot, Ewan and Wyatt. Elliot is autistic and Wyatt is going through diagnosis now.
Our sons
Left to right: Elliot, Robyn, Matt, Wyatt and Ewan 12 Your Autism
Elliot, aged nine, is a sensory avoider. He’s sensitive to sound, artificial light and is not great with touch. His passion is collecting things, particularly rocks and shiny objects. We have a huge pile of stones in the garden and on our allotment. Generally, he’s very tidy and likes everything to be ordered and clean. His bedroom is his safe place, but when he is overwhelmed, he trashes it. We put it all back together as part of getting him to relax again. We had an awful diagnosis experience. Elliot was hitting all his milestones up to 16 months, but then regressed. The health visitor noticed, but it took seven and a half years to get the diagnosis. We were sent on parenting courses and he was diagnosed with ADHD. The problem was that he was masking at school and loved all the school rules, so had no signs there. The school’s testimony counted against us. Finally, he was diagnosed at Great Ormond Street Hospital. Ewan is eight and neurotypical. He’s a young carer for his brothers. Wyatt, aged six, is a sensory seeker with Tourette’s. He can be angry, aggressive and stubborn at times, and
Real life
has a pathological demand avoidance (PDA) profile. His outbursts make him uncontrollable at school. Unsurprisingly, he doesn’t sleep easily and we have no real plan at the moment to console him. We’re only a few months into the diagnosis process with Wyatt. This time, it was his school that pushed for the diagnosis.
Lockdown life
Before lockdown, we had some semblance of a routine. We knew where we were. I feel the pandemic has ruined Elliot as a child. Elliot is a germaphobe. He wants everyone to wear a mask at all times – and at school. When he goes out, he won’t touch anything and is really terrified. He makes us all change our clothes when we get home. During the lockdowns, he became pretty much mute. He missed the walk to school and the freedom he had. I had to be really careful about having the news on in the house because it scared him. I used the National Autistic Society’s website for information instead. When I got COVID, Elliot’s worst fears were realised. Matt took unpaid time off work to care for everyone. I now suffer from partial blindness, and haven’t fully recovered – and I’ve also recently been diagnosed with MS.
Robyn’s five-year plan Robyn campaigns for autistic people’s rights. This is what she wants to happen for her family over the next five years:
● For our boys to be happy ● To be able to walk out of the house without being judged ● To have education tailored to her children and to see them thriving ● To have education equal to their peers ● Elliot settled and happy at secondary school ● Wyatt getting to Year 6 without being excluded.
Six-year-old Wyatt is a sensory seeker
If anything, Ewan has been the worst affected by lockdown. He couldn’t go to his young carers’ group, and didn’t have the respite of going to school. Sharing a room with Wyatt meant he had no escape. He tends to be the target of daily meltdowns and wasn’t entitled to go to school. Ewan just wanted a break. Wyatt thought lockdown was great. He enjoyed digging at the allotment, brain breaks, and scootering. But he couldn’t home school – online learning was a non-starter.
Our lifelines
We’ve had a lot of support and advice from the National Autistic Society over the years. When the school challenged Elliot’s autism diagnosis, we called the team for advice. We made a complaint to the school and they apologised. Summer 2021 13
Real life
I’ve used the website millions of times to find out about the rights of autistic children, reasonable adjustments and discrimination in shops. And I’ve used all the great information and resources for mums like me to good effect. I pass all the information on to help other people. I feel I’ve found my passion and desire to make an impact. I used to work in retail, but now I work as a specialist behavioural teacher at Elliot and Ewan’s primary school. I’d like to be a special educational needs co-ordinator (SENCO) in the future.
The team at the Thurrock Branch have been my absolute rock. They’ve done so much for us, going well above and beyond and giving us experiences we wouldn’t normally have. They helped with Elliot’s Education, Health and Care Plan application. They even connected me with the local Clinical Commissioning Group when I had issues with my doctor. In lockdown, we received self-care packages, and the kids’ social group Zoom calls on Saturday mornings. The team shared important information, like our entitlement to the vaccine and rights at school. Above all, the Thurrock Branch has given me a safe space and a shoulder to cry on.
Coming out of lockdown
What I’ve learned 1. Create a safe space in your home for your child, somewhere they can escape to when things get too much. Make it a space that fits your child’s needs in a crisis. The most important thing it needs to do is give them the time and space they need to process. 2. If your child finds outings overwhelming, create a sensory bag to take with you. Tailor this to your child’s needs. As a guide, ours contain ear defenders, sunglasses, scented dough, bouncy putty, chew buddies, a weighted snake, a stress ball, a stretch toy and a tangle toy. You can get items like this from your local supermarket in the party section. 3. The journey of learning what works for your child is trial and error, and what works for one child might not work for yours. Take time to figure out what works and what doesn’t, and do not beat yourself up if something doesn’t work immediately. 14 Your Autism
The boys are all really happy for lockdown to be over so we can visit family and attend the local support groups they have missed. There was a lot of anxiety about the return to school and it’s been hard to settle and adjust, but we know it takes time to get back into a routine. To support this, the school offered a social story, which was helpful. I spent a lot of time going over the returnto-school protocols so that they knew what it would be like when they returned. Elliot still has worries and anxieties about COVID and the possibility of catching it, but he is happy maintaining the ‘Hands, Face, Space’ advice from the Government. The transition back to school has gone well for him. However, Wyatt has struggled. Ewan has been able to get out more, which is great. And we are working with the school to help them all settle back into a routine. This has been the change we needed. Our charity is a trusted source of information through difficult times and in a changing environment post-COVID. Please help us be there for families like Robyn’s by donating at www.autism.org.uk/ appeals
Health
Autism and eating disorders Dr Pooky Knightsmith writes about anorexia, autism and lessons learned on the road to recovery. Over the page, Andrew Edwards discusses restricting types of food
This article contains information that you may find distressing.
I have a long history of anorexia and, for the past few years, have been walking through a constantly revolving door of illness and recovery. When I was hospitalised in 2017, I got rapidly more unwell until I was given a diagnosis of autism – and my treatment was radically revised. Here are some of the lessons I’ve learned now that things are finally beginning to settle.
Lesson 1: I’m more than a label, but a label helps
Being labelled as autistic led to an overnight overhaul of my treatment, and I went from getting rapidly more unwell to being given the right support to take positive steps. The label gave my treatment team permission to revise the way they dealt with me, and to realise that, sometimes, they had to turn the typical approach on its head to make progress. The label also helped me to begin to understand myself, and make sense of a lot of the difficulties I’ve faced my whole life. Being able to view myself through this new lens was incredibly helpful, and allowed me to be kinder to myself and to begin to rethink my approach to many things.
Lesson 2: Traditional treatment can do more harm than good
Before diagnosis, for example, I was being forced to engage with a wide range of food types; after diagnosis, I was allowed to be very selective at first, and create a plan with 16 Your Autism
my treatment team to very slowly increase my range. Having been a healthy weight for more than 18 months, I am still slowly introducing food groups, but this very slow and step-based approach has enabled me to make consistent progress. The traditional method resulted in me completely shutting down, disengaging and rapidly losing weight – even when in treatment. Another example is that the ward I was on relied heavily on group therapy. For me, this was actively harmful. Working as part of a group is very complicated for me, and I was unable to engage with the content. I would sit mute, but highly distressed. After my diagnosis, I was withdrawn from group therapy and given one-to-one support, which allowed me to engage. The content was largely skills-based/dialectical behaviour therapy – a type of talking therapy. It’s based on cognitive behavioural
Health
therapy, but specially adapted for people who feel emotions very intensely.
iStock .com / LuisPortugal
Lesson 3: Little things can make a big difference
Once I had more understanding about which parts of my daily experience were likely to be linked to my autism, I could ask for adaptations to be made. They seemed minor, but made a big difference. For example, the therapy room had a clock in it. For the first few sessions, I couldn’t focus on anything other than the sound of the clock. Once I understood that, and asked for the clock to be removed, things quickly got better. In addition, timekeeping wasn’t always good on my ward. I found it very hard if things didn’t happen when I was told they would, so this was addressed. Minor substitutions would also be routinely made in meals. For me, this meant I wasn’t presented with what I was expecting, and couldn’t eat it at all, so efforts were made to avoid substitutions and to warn me ahead if they were made.
Lesson 4: The combination of autism and starvation is like autism on steroids
When my brain was very starved, the symptoms of my autism went into overdrive.
Giveaway Dr Knightsmith’s story is featured in Supporting autistic people with eating disorders: a guide to adapting treatment and supporting recovery, edited by Kate Tchanturia (JKP). We have two copies to give away to members. For a chance of winning the book, email your details to YourAutismMag@nas. org.uk by 20 June, quoting ‘Eating disorders’. The winners will be announced in the next issue.
When I am healthier, I am able to largely mask my symptoms, but when I was very underweight, I didn’t have the ability to mask and manage. This meant that weight gain was hugely important to break the cycle because, every day, my world was shrinking and my anxiety and distress was increasing. This meant that any way we could find of me taking on calories was fair game. At first, I lived off a single flavour of Ensure [a weight-gain drink] and the introduction to solid food was far slower than usual treatment pathways would have recommended. But we did whatever we could to halt the weight loss and help me to feed my body and brain.
Lesson 5: Adjustment to life outside the unit required significant support
On the ward, there was a very rigid routine, very carefully planned meals, and everything was made very predictable. This hugely supported my progress and was an ideal fit with my autistic traits – but it meant the transition back to the real world needed very careful management. We tried to take what had worked well on the unit (planned meals, fixed timings) and replicate this at home. We did find, though, that I was very motivated to eat well and function well with my children, so we built this into my treatment plan. While I was on the intensive day-patient programme, I was allowed to eat breakfast and dinner at home with my family whenever I felt able to do so.
Lesson 6: I have to work hard to stay well, and being honest with those around me helps
I can trace back many of my historic relapses and realise that autistic burnout was a recurring theme. Now, I am much more careful to be aware of my day-to-day needs and to build in adequate time for self care to help me reset. I’ve revised my working patterns and how, when and with whom I socialise. I’m also aware of flashpoints, such as the school holidays, when routines Summer 2021 17
Health
change and I get less time alone. I’ve also worked hard to re-educate those I work with, and my friends. Having masked my autism for so long, people can sometimes be dismissive – which is hard – but when I take time to truly explain, I find that, on the whole, people are supportive. They will make the accommodations that might feel small to them, but feel huge for me. That might mean, if I’m speaking at a conference, that I’m not expected to network at lunchtime, but am given a room to take time out. Or, if I’m meeting with a friend, I meet one to one instead of in a group. There
are a whole host of little things – but, added together, they make a big difference to me, and I think they will mean I’ll finally be able to stay well instead of constantly nose-diving back into anorexia. Read more about autism and eating disorders, and getting treatment, at www.autism. org.uk/eatingdisorders Hear more from Dr Pooky Knightsmith at www. pookyknightsmith.com
“I wanted to bulk up” Andrew Edwards talks about his relationship with food As an autistic person who is into health, fitness, strength and conditioning, my greatest challenge has been my nutrition. By using MyFitnessPal, which calculates all your calories and nutrients from more than two million foods stored, I have a better understanding. It was recommended to me by my former coach, Geraint. However, I fell into a different habit of consuming too much protein. (I justified this by wanting to bulk up.) I felt that I had let Geraint down, and messaged him to apologise. He said that the way the media perceives carbohydrates as ‘evil’ was at fault for my then-attitude regarding them. He always encouraged me to have a healthy relationship with food and, within reason, not to deprive myself or feel guilty.
18 Your Autism
After two and a half years of failing to process that I needed carbohydrates to fuel my training and give me energy after a workout, my autism may have finally processed this information. I now feel healthier and look the best I ever have.
Hard to digest
The difficulty in processing something that could be easy to digest for some is typical of autism. I need information to be calmly, clearly, concisely and sometimes repeatedly articulated before it dovetails into place.
I was significantly overweight through my childhood and into my 20s. After this, I wanted to live a healthy lifestyle, but then ate the same foods repeatedly, even some I didn’t like if they were ‘healthy’. Uncomplicated, scientific nutritional advice wasn’t forthcoming, especially for someone like me who is very statistical and numbers driven. Despite studies showing it isn’t unusual to be autistic and have an eating disorder, I feel it is under-discussed. It is seldom termed an eating disorder for someone who is autistic. Usually, it is an extension of obsessional behaviours. Anorexia and bulimia are the most widely discussed, but more recognition is needed of eating disorders accompanying autism and related conditions. This article is dedicated to the memory of my beloved mother, Hazel Davies. www. andrewedwardsautism.co.uk
Interview
“Being autistic is just being me” We chatted with Ashley Storrie, star of new BBC Three comedy Dinosaur about an undiagnosed autistic woman Tell us about your new TV show, Dinosaur
We’ve filmed a pilot show about an undiagnosed autistic woman navigating the world around her and the inconsistent people in her life. It’s so exciting!
What was the inspiration for the programme?
Matilda Curtis, the writer, has grown up with a family member who is on the spectrum. She saw those stories weren’t getting told from a realistic perspective, or a female one, and wanted to change that.
Is this one of the first TV programmes to feature an autistic woman?
I think there are plenty of undiagnosed female detectives on TV. It’ll be one of the first instances of an autism story being told about a woman in a way that feels authentic to me.
When were you diagnosed as autistic?
This is a complicated one for me. My father was diagnosed when I was a teenager and I asked my then GP for advice about getting diagnosed. I was told that if I didn’t have to, I shouldn’t: “You don’t look autistic and you want to be able to 20 Your Autism
get a job when you leave school.” So I tried to be ‘normal’ and then, in my 20s, started to embrace it. I’ve always known... but I got my certificate a couple of years ago.
What is being autistic like for you?
It’s anxious, always worrying what people are thinking and never knowing. Being a ‘good friend’ in the traditional sense doesn’t come naturally, but I think I’m a good friend in other ways. Being autistic for me is knowing as much as I can about the things I love, and never tiring of them. I struggle to engage with things I don’t care about. Being autistic for me, is just being me.
Why do you think so many autistic women go undiagnosed?
We’re good at pretending to be ‘muggles’ [non-magical people, from the Harry Potter books], is the simple answer. An inherent bias in medicine and mental health against women is the complicated one.
If you could destroy one myth about autism, what would it be?
You’re not ‘autistic about Harry Potter’, you just like it a lot... and that we’d all make great detectives. Some of us would be terrible at it.
How did you start out in comedy?
I started at 11, it is my mum’s job [Ashley’s mum is Janey Godley] and I just knew it was something I should be doing. I stopped for many years and restarted in my 20s, because – after trying other jobs – I realised it was what I should be doing.
We love your videos If Harry Potter was Scottish/If The Handmaid’s Tale was Scottish. Were you a big reader as a teenager?
I wasn’t a reader at all until I found the books I liked. I hated the fiction we were given at school and just couldn’t focus. Then I found Margaret Atwood, Terry Pratchett and Harry Potter, and the kinds of stories I enjoyed, and I became a voracious reader. Also, I knew where all the dirty bits were in the adult books in the school library and became the unofficial docent [teacher] of filth for girls in my class.
Does being autistic influence your comedy?
I love words, funny words. I love how a pattern of unfunny words can make something hilarious when put in the right order. I think my specialist interest in funny things and funny words certainly has an
Elaine Hill
Interview
influence – and, when I watch myself perform, I can see that, physically, I don’t hold myself like other comics.
What advice do you have for autistic people who want to start writing comedy?
Just do it. You’re certainly not alone
in the comedy and entertainment world. Do it about anything and all the things you love!
What other projects are you working on?
I have my radio show every Friday on Radio Scotland: The Ashley Storrie Show. You can listen to that
on the BBC Sounds app or website. I have some television projects coming up with mum that I’m really excited about, and I am still diligently trying to become a Twitch streamer (it’s a lot of work and I get distracted), but I’m there most nights – twitch.tv/ ashleystorrie Summer 2021 21
Training
Green shoots If you or your autistic child enjoys gardening, there are some amazing schemes offering care, training and apprenticeships in horticulture. We found out more about Mires Beck Nursery in Yorkshire and nationwide company Ground Control
Rachel waters the plants 22 Your Autism
Mires Beck describes itself as a place to grow. The 14-acre horticultural nursery in East Yorkshire supports around 100 adults with learning difficulties, autism and/or physical disabilities every week. The nursery grows around 300 perennials, 50 herbs, 100 Yorkshire wildflowers and 28 varieties of British trees. It is open to the public, and supplies garden centres and farm shops across Yorkshire and Lincolnshire. All funds from selling the plants and trees go towards financing the operation. The Anniversary Garden within Mires Beck caters for those service users who need extra one-to-one care. Anniversary Garden Coordinator Shelley Morris says: “We promote a happy, safe and calm working environment that gives all our service users a sense of worth, and we communicate verbally and through sign language. “Working with plants is very therapeutic for autistic people, as it puts focus and attention on tending the plants – which, in turn, helps calm anxiety and stress. “We promote friendship that, according to some parents, wouldn’t exist outside Mires Beck. Socialising can be a big thing for autistic people, so it’s important they feel relaxed and comfortable around their peers.
Training
Callum’s story Dawn McKenzie is mum to Callum, 22 “Mires Beck is Callum’s oasis in the desert. It allows him to be an adult, allows him to grow, develop, learn new skills, make friends – but most of all it gives a purpose to his life. We always say ‘Callum’s going to work.’ When at home during lockdown, he struggled to cope with the isolation, and every day he asked ‘when am I going
to Mires Beck?’ When he returned in November, the difference in him was obvious to see. As parents of a vulnerable adult, the most difficult thing for us is finding a place to trust, where he’s safe, where he’s being cared for and where he’s being nurtured. Mires Beck ticks all these boxes in full!”
“The cognitive and physical benefits of improving concentration, taking care of plants and watching them grow can really help build self-esteem.” The nursery is a thriving social enterprise. Besides horticulture, services users do crafts and woodwork, and these products are sold at onsite fairs and in its shop; bug hotels are a bestseller. Service users attend for between one and five days a week. They can start at age 18 and stay as long as they want. The nursery offers transition days to SEN students from 16 years old, with one-to-one support. The team considers every application and tries to accommodate adults looking for a horticultural and conservation environment. They also provide places within their catering team and for garden craft work. For more information, visit www.miresbeck.co.uk
The cognitive and physical benefits of taking care of plants can really help build self-esteem
Ground Control
Garden maintenance and landscaping firm Ground Control offers inclusive apprenticeships, ensuring opportunities are available to anyone with learning difficulties. The company maintains more than 50,000 sites, with a client list including three of the country’s four biggest supermarkets. It directly employs 1,000 people and supplies work to more than 5,000 contractors. Its programme offers mentorship, practical support and advice to participants, as well as coordinating with their school or college to adjust training to make it accessible and inclusive for people with learning difficulties. Ground Control staff have supported, mentored and now employed 20-yearold Wayne Gorman (see ‘Wayne’s story’). Following close on his heels is 19-year-old Jordan Brown, who has completed his supported internship and is starting his grounds maintenance apprenticeship, while Kenny Hanney’s career has begun via the internship programme. The scheme is proving popular with local school leavers. Partner school The Westminster, Dudley, West Midlands, is supporting five more pupils to move onto Summer 2021 23
Training
Liam at Mires Beck Nursery
the programme over the next 12 months. Eventually, graduates will become their own boss and work for themselves – as part of a qualified field team – and be given the support to work on maintenance contracts on behalf of Ground Control. “We’ve worked closely with teachers and regulatory authorities to make the training courses more accessible and flexible for people with learning difficulties”, says Roy Candlin, Contracts Manager at Ground Control. “A key to this has been the removal of
barriers – such as the requirement for five GCSEs – that were preventing a lot of people like Wayne, Jordan and Kenny from achieving their potential.” “No other apprenticeship programme in the country compares to this,” says Oliver Flowers, Headteacher at The Westminster School. “It’s a beacon of best practice, as it gives our young people an opportunity to develop a career and gain real independence.” For more information about the scheme, visit www.ground-control.co.uk
Wayne’s story Wayne Gorman, 20, has recently passed all of his exams and completed his apprenticeship with flying colours. He started his grounds maintenance apprenticeship in 2018, working on Ground Control’s Sandwell Schools contract with the support of his college, and will now be joining Ground Control full-time in September. Wayne previously struggled in learning situations because of his autism diagnosis and associated issues. But with onsite mentoring from Ground Control staff, he has flourished, and demonstrated through perseverance and hard work how capable he is. Wayne enjoyed all aspects of his course – especially earning his own money – and says he’s looking forward to saving for a house, car or bike!
24 Your Autism
Apprentices Kenny Hanney, Jordan Brown and Wayne Gorman
Advice
How to… help an autistic child regulate their emotions Does your child experience intense emotional outbursts? Our Help and Support Adviser Claudine explains the best way to respond When your child is distressed, do their emotions escalate from zero to 100 in a short period of time? Do their reactions appear disproportionate to the incident that caused them? Do you find it hard to calm them down when they are angry or upset? Emotional regulation is about our ability to evaluate and modify our behaviour in situations that might provoke emotions such as stress and anxiety. Developing the skills to emotionally selfregulate can be an important aspect in maintaining overall wellbeing. For some autistic people, understanding and moderating how they feel can be very difficult. When an autistic child struggles to understand how they are feeling and what they can do about it, this can result in aggression, self-injury, withdrawal and meltdowns. A combination of factors explain why emotional dysregulation is common for autistic people. These include biological differences in brain structure and function, difficulties in interpreting social and emotional cues, sensitivity to change and environmental stimulation, as well as problems finding responses to apparent threats. 26 Your Autism
Creating an emotional levels chart
One method to help someone develop greater understanding of their emotions is an emotional levels chart. It can help to define the different emotions we feel when we are distressed, such as what it means to be angry, sad, worried and stressed. If a person struggles to identify their physiological needs, the list can be extended to include descriptions of what it means to be hungry, tired and thirsty. What to include in the chart: ● What does this emotion look like? Begin with a picture of the facial expression of the emotion you wish to explore. This could be something your child draws themselves. ● What do you feel in your body? Help your child to identify and describe the sensations they feel in their body when they are experiencing this emotion. For example, when they are angry, they may feel their body tensing, their heart might beat faster, and they may breathe quicker. ● When have you felt this way? Support your child to write about different situations where they have felt this emotion. For example, they may become angry when they are prevented from playing computer games, or when they do not understand what is expected of them. If your child can’t think of examples, another option is to present a scenario and ask your child how that situation would make them feel.
iStock .com / DrAfter123
Advice
● What do you do when you feel this way? Ask your child to describe how they currently respond to this emotion. For example, when they are angry, they may shout, or withdraw, or hit and punch. ● What could you do instead? If your child’s current response is producing a negative impact on themselves or others, this section gives you and your child the opportunity to develop healthier coping strategies. These could include: stopping what they are doing and moving on to something else; asking for help; taking some time alone; taking some deep breaths and counting to 20; being able to indicate that they are becoming distressed; or using a fidget toy. Finding clear coping strategies and offering these to your child is a great way to help
them manage difficult emotions. It will take time, and a process of trial and error, to find the things that work for your child and to avoid the things that don’t. Involve your child in this process as much as possible. After an incident has occurred, calmly ask your child what went wrong and how they might fix it next time. To keep track of progress, ask your child to rate their levels of distress from zero to ten before and after they try out a strategy. This system will give you clear evidence of what helps and what doesn’t.
Your response
Alongside this, it can be helpful to think about your response to your child’s distressed behaviour. Pay attention to early signs of distress, which may include stimming behaviour, withdrawal, clenching fists, Summer 2021 27
Advice
tensing body, pacing, non-responsiveness or hyperactivity. At the first signs of distress, try the following: ● If the activity or request is not critical in that moment, consider letting it go. ● Remove stimulus if there is something you can identify that may be contributing to the distress. ● Redirect to the next thing or something else using a visual prompt. ● Offer a sensory option, such as a fidget device. ● Simplify the task or activity if appropriate. Important things to avoid in moments of distress: ● Asking a lot of open-ended questions. ● Asking how they are feeling. ● Telling them they need to calm down. ● Talking them out of repetitive or stimming behaviour. ● Asking them to do anything that is not focused on helping them to become less distressed.
Important things to do in moments of distress: ● Remain calm yourself. ● Use your child’s name when talking. ● Use simple and supportive statements. ● Reflect back to them how they are feeling. For example, “I can see that you’re feeling upset.” ● Offer to solve the problem together. ● Allow extra time to process before repeating a direction or expecting a response. ● Maintain a positive outlook and remind yourself that they are doing the best they can with the tools they currently have. Bear in mind it may take some time for your child to return to a more stable mood after a heightened event and, while they may appear fine, they may still be processing what has happened. For this reason, it is important not to move too quickly back into activities or demands that may trigger another meltdown. During de-escalation, let time pass and allow for a period of recovery before discussing the consequences of any negative behaviours.
Read more about distressed behaviour at www.autism. org.uk/distressed-behaviour
28 Your Autism
Advice
iStock .com / PhotoAttractive
How to… teach your child to ride a bike Hoping to enjoy some cycling this summer? Ola Lawal, Senior SEN Bikeability Cycle Instructor, gives his tips on teaching your autistic child to ride a bike
1. Environment
Choose a quiet, flat area with no distractions; closed car parks or tennis courts in the park are good options. Most people prefer to learn without others watching, so go there early in the morning before it gets busy.
2. Warm-up
The exercises below will help your child (and you) to warm up muscles and shake off nervous tension. Do: ● Two to four minutes of gentle jogging ● 10 x star jumps ● 10 x forward arm rotations ● 10 x backwards arm rotations ● One minute walking backwards ● Five ‘jump and spins’ facing the opposite direction to the left and then to the right.
3. Clothes
It is better to overdress, then your child can take layers off as they warm up. Typically, when learning, trainees tend to hold on to the bike too tightly, causing blisters or sore hands. Gloves soften the handlebar rubber and keep fingers warm. In summer, use fingerless gloves. 32 Your Autism
4. Reassurance
Often, trainees have had previous failed attempts and associate learning to ride a bike with pain. So it is very important that you spend time reassuring and explaining that you will be there to hold and support them throughout the training. I explain that, during the training, I will be their new shadow to follow them wherever they go and stop them from falling.
5. Equipment and techniques
You could start on an exercise bike at home to teach pedalling. Trainees have a tendency to pedal backwards or not pedal at all; you can help by placing your hand on their foot and assisting them to pedal. If they can pedal independently, try to talk to them about something they are passionate about or allow them to play a game on your phone while they pedal. This will help build up their multi-tasking ability. You could also use a balance bike, which will help develop the correct steering response. Most people have a reverse sense of balance, so if the bike is falling to the left,
Advice
their natural instinct is to steer to the right and vice versa. This needs to be explained or shown. While your child is on the bike, hold the seat and lean the bike slightly to the left and help them steer slightly to the left by supporting/directing the handlebar. Likewise, lean the bike slightly to the right and help your child steer to the right. Aim to get your child to steer in the direction of the bike lean without supporting/ directing the handlebar. Aim one is to get your child walking while sitting on the balance bike – small steps at first, then larger steps. Aim two is a frog motion using two legs at the same time to push themselves along. During the walk and the frog, you should be shadowing them with your hand resting lightly on their back for moral support (if they can tolerate this). Watch them to ensure that if the bike leans to the left, they steer to the left, and if the bike leans to the right, they steer to the right. In the beginning of the walk, you may hold on to one side of the handlebar and help them to steer in the direction of the lean. If using a traditional bike, set the seat low so their feet can comfortably reach the ground. Initially, taking off the pedals and using it as a balance bike can be very useful until they get used to steering in the direction of the bike lean (as above). Once they get used to ‘walking’ and ‘the frog’, raise the seat so that the balls of their feet are in contact with the ground. Re-fit the pedals, put into gear one or two. If your child has not been able to use an exercise bike, you need to fully support them while they get used to pedalling; do this by placing one hand on their back and hold the end of the handlebar. BMX-type bikes can be geared quite high, needing a lot of physical effort to pedal, which is not ideal for learning.
6. Break training into simple steps
Breaking learning to ride into small easy steps is the key to success. Work at your child’s pace, and don’t progress to the next stage until they are feeling comfortable and able to do the exercises. You may be on a
particular session for a few weeks. All should last 35-45 minutes. Session one Warm-up – Getting on – Pedal practice if you have an exercise or balance bike – Balance practice – Walking Session two Warm-up – Getting on – Balance practice – Walking and Frog Session three Warm-up – Getting on – Balance practice – Frog Session four Warm-up – Getting on – Balance practice – Re-fit pedals – Pedal practice with you supporting one side of the handlebars and one hand on their back while they pedal. Start to withdraw your handlebar support once pedalling becomes fluid, but continue to support their torso with one hand on each shoulder. Work up to holding them as lightly as possible. Most learners who fear falling will really struggle to learn how to ride a bike, so it’s very important to fully support them while they take their early learning steps.
Ola Lawal has been delivering Learn to Ride training to people with special educational needs for more than 20 years. Contact him by text on 07840 525983 or email whirlingwheels562@gmail.com. Bikeability courses are available throughout the year in most areas: www.bikeability.org.uk Summer 2021 33
Advice
Planning for the future: financial arrangements Helen Gale explains how she used our charity’s Wills and Trusts Advice Service to make a will and set up a trust fund to manage her son Harry’s future finances My son Harry is 18, and lives at home while attending college four times a week, studying for a life-skills course. Harry loves making short films with his camera and editing them on his computer. He enjoys doing puzzles, going for walks and swimming, especially if they have water slides. Harry is an only child, and his father and I know that he will need 24-hour care in the future. With this in mind, we had to make sure Harry’s money would be put in the correct place so he would be financially secure when we’ve gone. We didn’t know where to start. We knew that a solicitor had to help us, but we didn’t know how to choose one. That’s why I jumped at the chance to get an appointment when I heard that the National Autistic Society was starting a free Wills and Trusts Advice Service. During my 30-minute phone call with one of their solicitors, they told me the first steps I needed to take. After my appointment with the service, I was provided with a list of specialist solicitors in my area by the National Autistic Society. I contacted one of these solicitors and my partner and I started the process of writing new wills and setting up a trust fund to manage Harry’s finances. The solicitor explained what we needed to do. He always cared for our and 34 Your Autism
Harry’s best interests. Nothing was too much trouble. While setting up a trust, my partner and I had a lot of things to talk about. We had to speak to various members of the family, who all agreed to help. In our wills, we have told our family members what we want for Harry after our passing. We also had a lot of tears, but we knew that it had to be done. We always had someone to answer our questions, no matter how silly we thought they were. It was much easier than I thought, and we now know Harry will be OK when we go. We have done everything we can to help him, and that is all we wanted to do. The Wills and Trusts Advice Service is brilliant. It made us realise why we needed to have everything organised for Harry, and helped us learn how to put these plans in place.
Wills and Trusts Advice Service The service is run by solicitors from Renaissance Legal, who can talk through your options with you, answer your questions and provide the information you need before starting to make your arrangements. Topics they can help with include questions about the types of trust that might be used, who you might choose as trustees, and how a trust is managed. The service operates on a call-back basis on Fridays between 11am-1pm. To book your appointment, please complete our web form at www.autism.org.uk/ willsandtrusts and we will be in touch, or you can call our Supporter Care team on 0808 800 1050.
Advice
Summer 2021 35
Advice
Wills and trusts: Q&A Writing a will means you can set out everything you want to happen with any property, money and belongings you own (your ‘estate’) when you die. If you have an autistic child who is under 18, you can also include guidance on how you want them to be looked after by naming a guardian. If you don’t write a will, your estate will be dealt with by the state. This could have an impact on your autistic child’s future that you would rather avoid. For example, if your child receives means-tested benefits and they were to receive an inheritance, they could lose their benefits. If they do not have the capacity to manage their finances, it could leave them open to being financially abused. Writing a will with the help of a solicitor will enable you to protect your loved ones’ future in the best possible way. It is also important to review your will from time to time to make sure it’s up to date with your wishes and takes into account
iStock .com / triloks
Why write a will?
any changes in your personal circumstances, such as marriage or new grandchildren. Updating your will usually costs less than writing a new one.
What is a trust?
A trust is like a pot into which you can put savings, property and any other assets. You then appoint one or more responsible people, known as ‘trustees’, to look after it. The money in the trust doesn’t actually belong to your child, and the amount they’re given can be kept within the limits for means testing. This way, it will not affect any of their benefits or care. As the trustees are in control of how the trust is used to benefit your child, you can protect your child from having to make difficult decisions for themselves and from any negative influence from others. Trustees are guided by a Letter of Wishes, in which you can set out
how you would like the money in the trust to be used. This could include providing for things such as the care of your child, or even specific requests such as taking your child on holiday. Before appointing trustees, you should think carefully about who you could ask to perform this role. It is a good idea to appoint one person who understands the needs of your autistic loved one, such as a family member, and another person who can cope with the administration of a trust – which can involve tax and investment decisions – such as a professional who is a member of STEP (the Society of Trust and Estate Practitioners). There are different types of trusts you can set up, and your solicitor will help you choose which is the most appropriate for your family and your circumstances.
Summer 2021 37
Notebook
Everything you need to read, do or see
Why can’t you hear me? Our autistic daughter’s struggle to be understood
AUTHORS: Andy and Amanda McCulloch PUBLISHER: Jessica Kingsley Publishers PRICE: £13.19 VERDICT: Moving and devastating account of Colette’s life This review includes information that you may find distressing. As Jane Asher’s foreword says: “This book will break your heart.” Colette died alone, run over by a lorry in the middle of the night. Eighteen hours earlier, she had walked out of the care facility for autistic adults where she was supposedly being looked after. Andy and Amanda McCulloch tell the story of their daughter’s life and untimely death, and the years in which her autism went undiagnosed (she was only diagnosed aged 33). She had a lifelong battle with eating disorders, anxiety and OCD. Wanting to live independently, she was extremely vulnerable to violence and abuse. The book is interspersed with Colette’s vivid and eloquent writing, her poetry and prose, showing how talented she was. The failings in her care are shocking. It’s all about box ticking and “nobody examines the long-term outcomes”. When Colette went missing from her care facility on the day she died, it was more than 12 hours before anyone did anything to find her. She had attempted suicide the previous month. The issue of capacity loomed large at the inquest – the care facility staff said they thought she had capacity, while the coroner concluded that Colette did not have capacity to keep herself safe. This important book is a call for much earlier identification of autism in girls and action to address the lack of suitable community and crisis care that understands the needs of autistic people. Suzanne Westbury, Editor, Your Autism
Any eye for detail
AUTHOR: Alfie Bowen WATCH AT: alfiebowen. photography VERDICT: Excellent short film about an autistic photographer From a young age, Alfie Bowen was interested in animals. This short film shows the story of his life, diagnosis, and ‘obsession’ with animals and nature. Alfie and his mother bring up his feelings of anger, anxiety and alienation that he felt because of bullying. He connected to animals more than he did most people, so photography gave him an escape from stress and pressure. Able to visualise the picture he wants to capture, images stick with him – even if they take months or years to get. He now seeks to travel to Africa and photograph animals in their natural habitat, as well as raise awareness of conservation. An eye for detail looks at Alfie’s interest in nature and how it helped him through life, as well as how the natural world can help others with mental illness. He talks about his own struggles, but encourages people not to give up. Wesley Emmott, young writer and Your Autism magazine reader, twitter.com/wesley_emmott
Giveaway
We have three copies of Grace Venters’ book (see page 41) to give away to members. For a chance of winning, email your details to YourAutismMag@nas.org.uk by 20 June quoting ‘William’. The winners will be announced in the next issue. The winner of last issue’s competition for a copy of S.E.N.D. in the clowns by Suzy Rowland is Rosemary Hopkins. The winners of Dr Amitta Shah’s book, Catatonia, shutdown and breakdown in autism, are Emma O’Kelly, Amanda Potts, Tans Theobald, Priti Patel and Dee Fox. Congratulations!
Summer 2021 39
p40 SKYBOUND_HPH_SUMMER21 2.pdf
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29/04/2021
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Notebook
Every child can learn (revised second edition) AUTHOR: Jane Blatt PUBLISHER: janeblattatwork.com PRICE: £15 VERDICT: Valuable insights into developmental issues
This book explains functional learning, which focuses on what children can do rather than what they cannot. Geoffrey Waldon developed the Waldon Method of Functional Learning to which this book – full of drawings and instructional chapters – owes everything. One only
has to note the chapter headings to know what is owed to key concepts such as ‘teaching must be child-centred’. Integrated therapy animates the book – techniques that may lead to children reading, writing and communicating, and to doing the often so difficult tasks of eating and sleeping. The book has insights into developmental problems that justify Michael Rutter saying that parents “will learn an immense amount from this splendid guidebook”. For parents of the just diagnosed, it is an invaluable guide. Michael Baron, founding member of the National Autistic Society
Our other top picks
2
4
Alfie’s way
The phantom killer and her autistic son: a mother’s journey to love and acceptance
An illustrated actionpacked story in verse for young children, Tanya Kharina’s story celebrates autism and Alfie’s different way of seeing the world. £6.99, Austin Macauley Publishers.
1
The Oscillations
In her new poetry collection, Kate Fox explores distance and isolation in the age of the pandemic. Throughout, a strong voice sings of what it means to be many things at once – autistic, creative, northern, a woman. £9.99, Nine Arches Press.
3
The musical staircase
This is 17-year-old Luca Saunders’ local radio show. He talks candidly about being autistic, which will be helpful to other young people, and about how music helped him during lockdown. bit.ly/musicalstaircase
A memoir, by our member Grace Venters, about her son, William, now aged 41. She tells of the family’s time in Argentina and the UK, and their journey from the 1980s – when little was known about autism – to now, as William lives independently with support from carers.
Do you have a recommendation for our top picks section? Email us at: YourAutismMag@nas.org.uk
Summer 2021 41
Readers to the rescue!
Post your problems or answers on Facebook at National Autistic Society Members or email YourAutismMag@nas.org.uk
Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members
Q A
Can anyone recommend talking devices for non-verbal autistic adults? Anonymous, via our readers’ survey
I came across an app called Proloquo2Go, which would be useful for non-verbal people. There is a YouTube video showing how it works – bit.ly/talkingFor extensive devices information and Grace Venters guidance about
A
We use Proloquo2Go for my son, who is 23. Zach is non-verbal, but very keen to communicate. Communication is so vital. It is the difference between a frustrated, angry and depressed person, and somebody who can make choices, express likes and dislikes, and let their needs be known. It can help diminish distressed behaviours if the right method is used. Zach is a visual learner. We started with PECS (Picture Exchange Communication System) when he was young, which he used fluently. Proloquo2Go seemed like a natural progression. It can be used on iPhone, iPod, and iPad. One subscription can be shared over six devices, which means you can upload it to your own phone in case of tech disasters. The app uses symbols and voice – you have a choice of natural-sounding voices.
Help me next!
You can use stock symbols or add your own, including photographs. New symbols are easy to add. The app gives the user set-up details, and AssistiveWare (www.assistiveware.com) provides free online training for facilitators; it is well worth using. We use an iPad mini for Zach and it works well. Proloquo2Go is a liberating app for Zach. It means that he can communicate at any time he wants or needs to. Consistency of use, expansion of vocabulary and increased understanding of the app mean that Zach is confident his voice will be heard. Emma Saysell spectrumofmisconception.com – a social enterprise selling gifts, helping autistic young people with complex needs to experience work.
autism, visit our website: autism.org.uk
Emma wins a copy of All cats are on the autism spectrum, by Kathy Hoopmann.
My son, nine, masks things that upset him while at school. But at home, his behaviour is distressed. What can we do? Anonymous, via our online community 42 Your Autism Autism
Send us your solutions for a chance to win a copy of Avoiding anxiety in autistic children: a guide for autistic wellbeing, by Dr Luke Beardon.
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.
Did you know you can remember the National Autistic Society with a gift in your will? For a free information booklet, please email or call
legacies@nas.org.uk
0808 800 1050
Snapshot
I’m a… cake decorator
Meet Robyn Lee, a 26-year-old autistic cake decorator who’s been baking up a storm with her incredible cakes
Robyn was diagnosed as autistic in her first year of primary school. While she struggled with the academic side of school, she excelled in creative subjects, including music, drawing, and arts and crafts. Robyn attended an autism support base at her local secondary school. She gained a few standard qualifications and decided to continue studying. During sixth form, there were a few gaps in Robyn’s timetable, so the school suggested she try a cake-decorating course. Here, she discovered her talent for baking. Her mother, Cathy Lee, tells us that this is when Robyn really started to shine. Inspired by her first taste of baking success, Robyn went on to complete an HNC in bakery at New College Lanarkshire. Unfortunately, she wasn’t able to find work in catering, and felt that employers may have been wary of her ‘disability’ or might have lacked an understanding of autism. When it came to larger businesses, Robyn
found it difficult to navigate the online application process. Eventually, she decided to start baking from home. She has now been running her own business, Celebration Cakes by Robyn, for eight years. She makes cakes for all occasions, including birthdays and weddings. She also bakes cakes for a farm museum café. She has her own flat just ten minutes from the family home and has made a big success of independent living. During lockdown, Robyn has been busy baking. This has helped her manage her anxiety and through some difficult times. She tells us: “I love making cakes. It is like therapy. I think that a cake is the star of any occasion. Whether it’s a wedding, a birthday, a retirement, or a christening, everyone wants to see the cake!” You can admire more of Robyn’s delicious cakes and place an order at: www.facebook. com/celebrationcakesbyrobyn Are you doing something great like Robyn? Email us at YourAutismMag@nas.org.uk Read our advice on finding work at www.autism.org.uk/ employment Summer 2021 45
Great North Run 2021 Join Team Autism this September and take on this iconic half marathon. Starting in Newcastle city centre, you’ll run over the Tyne Bridge to the roar of the Red Arrows. Register today for only £50! www.autism.org.uk/gnr
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)