YOUR Autumn 2021
Holly Smale
Why I sought a diagnosis
Getting support for your child
Catastrophising
Purple Ella on ways to control your anxiety
Plus
Mental health inpatient advice, self-employment, and autismfriendly clothing
-,
Back to school
YOUR
Back-t schooospecial l
Autumn 2021 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
Holly Smale
22
Work out
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Contributors Hermione Cameron HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society. To join, visit www.autism.org.uk DESIGN AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG © Your Autism magazine Autumn Vol 55, No 3 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.
Getting support at school
Contents
18
What’s new?
04
Autistic entrepreneurs
26
My diagnosis
11
Catastrophising
32
Back-to-school special: The best days of our lives?
12
A smoother transition
14
Advice on what steps to take
18
Things to read, do and see
A round-up of the latest news
Teacher Virginia Betts
How school affects Emily and Leeann
An easier return to school
Getting support at school
What extra support might your child be entitled to?
Author Holly Smale
“I love my beautiful, autistic brain”
Setting up your own business
How to stop imagining that the worst is going to happen
Avoiding admission to an inpatient mental health hospital Notebook
39
Readers to the rescue
42
Masking in school and meltdowns at home
22
34
I’m an... Eddie Stobart expert
43
Fiona Jones talks about her love of lorries
never
“You must give up advocating for your family member. Get as much
publicity as you can”
Sharon Clarke
34
Autumn 2021 3
What’s new?
Get in touch!
Our round-up of the latest news and views
Government invests millions in better support for autistic people in England The Government has promised to tackle long diagnosis waiting times in the new Autism Strategy for England, after successful campaigning from our charity’s members and supporters. Published on 21 July, the Autism Strategy sets out how the Government plans to support autistic adults and children over the next five years. It represents the biggest investment in England’s autistic people and promises to: ● invest £10.5 million into finding new ways to reduce diagnosis waiting times for autistic children and young people ● invest £2.5 million to improve the quality of adult diagnostic and post-diagnostic pathways and diagnosis waiting times ● increase public understanding of autism with a long-term, nationwide initiative ● provide £18.5 million to prevent autistic people from falling into mental health crisis and £21 million to local authorities to help people in mental
Read the top five things you need to know about the Autism Strategy at: www.autism.org.uk/ new-autism-strategy
4 Your Autism
●M ake sure your voice is heard; sign up for campaign updates at www.autism.org.uk/campaign-updates health hospitals back into the community ● improve understanding by training education professionals, job centre staff and frontline staff in the justice system. The commitments total almost £75 million. However, they only account for the first year of the strategy – we are expecting further financial commitments for 2022-26. We and our supporters have long demanded better support and services for autistic people through our Not Enough and Left Stranded campaigns. In 2019, we found that more than two in three autistic adults don’t get the support they need. This was made even worse by the pandemic. We’re pleased the Government has committed to tackle these inequalities with concrete proposals and funding. However, true change cannot happen without fixing social care – we will campaign hard for this to happen.
Acceptance
Nellie Allsop, autistic woman and campaigner, says: “Having been diagnosed last year, aged 25, I’m still to tell people close to me that I’m autistic, for worry that they won’t quite ‘get it’. That’s why I’m delighted to hear that this strategy aims to improve the understanding and acceptance of autism among the general public. “I’m pleased it will include plans to build the right mental health support in the community for autistic people. As someone who avoided a hospital admission thanks to the work of an NHS crisis team, I’ve experienced, first hand, the benefits of good mental health support in the community. Nevertheless, more needs to be done to improve community support.”
News
New guide for mental health professionals Our latest good practice guide, produced with Mind, will help mental health professionals adapt talking therapies for autistic adults and children. Autism is not a mental health condition. But high numbers of autistic people suffer unnecessarily from poor mental health and our supporters have told us it’s their top priority. The guide, funded by the Pears Foundation, sets out how often simple adaptations can make a huge difference to autistic people’s experience of therapy. Key recommendations include improving autism understanding for all staff through training; making waiting and therapy rooms less overwhelming and therapists adapting their communication to the needs of the person they are supporting. The guide was informed by the views of more than 1,500 autistic people and almost 2,000 family members, as well as mental health professionals. Thank you to all our members who contributed.
Christmas cards out now
LaurenRochelle Fernandez, who is quoted in the guide, said: “After I was diagnosed with autism and ADHD, I reached out to a number of different services but as a black autistic woman I found myself often misjudged, mistreated and misunderstood. “These experiences meant I developed a deep mistrust of mental health professionals, until I met my current counsellor. She is flexible to my needs. For example, I really struggled at first doing sessions on the phone, instantly she asked if it would suit me to engage in video therapy. “She takes things at my pace, listens to me and tries to genuinely understand where I am coming from. I can’t tell you the difference it makes.” Download our free good practice guide at www.autism.org.uk
Congratulations to our Christmas card competition winners! 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 children’s winner is Penguin under the southern lights, designed by seven-year-old artist Alexander. Alexander was inspired by penguins and coloured lights in the sky, and penguins and turtles are among his special interests. Our adult winner is Jessica, who designed the lovely Winter evening walk (pictured above). Jessica was inspired by penguins and winter scenes. Everything you buy from our Christmas range will, as ever, go towards creating a society that works for autistic people. Cards are on sale now, so get yours at www.autism.org.uk/christmas-cards
New Blackpool Adult Support Group
We are delighted to launch our latest local group: the Blackpool Adult Support Group. Adele Redfern, Group Chair, said: “It’s a place for people to chat about their struggles, ask questions and share their joys in a safe place where we accept each other.” Find out more at www.autism.org.uk/blackpool-adultsupport. To find your nearest branch or group, visit www.autism.org.uk/branches Autumn 2021 5
News
The Entertainer’s autism-friendly Quiet Hour now runs every morning We are very pleased that toy retailer The Entertainer has extended its much-loved Quiet Hour to run every day in its 171 stores. The initiative aims to create a calmer shopping environment for autistic people and for any shoppers who find the hustle and bustle of shopping an uncomfortable experience. After previously running on Saturdays and in the school holidays, Quiet Hour will now be happening every morning for the first hour of opening. During the Quiet Hour, there will be no music playing, the lights will be dimmed wherever possible, and the stores will be made to feel calmer. The Entertainer has been awarded our Autism Friendly Award for its commitment to supporting its autistic customers and their families, including providing additional staff training. Tom Purser, Head of Campaigns at our charity, said: “We are very pleased The Entertainer is extending its Quiet Hours. It is really showing its commitment to autistic shoppers and leading the way for other retailers.”
New Welsh Code of Practice for Delivery of Autism Services The Welsh Government’s Code of Practice on the Delivery of Autism Services came into effect on 1 September. The Code provides clarity to local health boards, NHS trusts, local authorities and Regional Partnership Boards about the Social Services and Wellbeing (Wales) Act and the NHS (Wales)
6 Your Autism
Act 2006, and the responsibilities and services they are required to provide to support autistic people in their day-to-day lives. It has been developed with autistic people and their parents and carers, and with the services delivering support. Thank you to everyone who fed into it via our charity.
Priorities in the first year include a focus on the recovery of services following the pandemic and support for autistic people who identify as black, Asian or minority ethnic. Find out more at gov.wales/newcode-practice-delivery-autismservices-published
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)
News
Introducing our charity’s new Chair We are very pleased to introduce Stephen Ladyman as the next Chair of the National Autistic Society. He will take on this vital non-paid role in November when Carol Homden steps down after nearly 10 years as our Chair. Stephen first started advocating for autistic people and families in 1998 as an MP and he set up the All-Party Parliamentary Group for Autism alongside our charity in 2000.
He’s also been a minister and held various chair roles since, including within the NHS. We’re thrilled to appoint someone with such a wealth of experience, skills and passion. As our Chair, Stephen will lead our Trustees’ oversight of the National Autistic Society. He will also be an ambassador for our charity, helping us create a society that works for autistic people. Find out more at www.autism.org.uk
New research on the impact of the pandemic on autistic adults
iStock .com / Ksenia Shestakova
A study co-produced by autistic individuals and advocates, and researchers at City, University of London and the University of Stirling, in partnership with our charity, has documented autistic adults’ experiences of the pandemic and how they feel about coming out of it. In spring 2021, 42 autistic adults and parents of autistic adults were asked about the changes to their daily activities and mental health during the pandemic. Many participants reported positive changes: reduced social demands, sensory triggers and need for masking were a relief. People felt more in control of their lives, and benefited from flexible ways to participate in activities. However, the climate of uncertainty and the sudden withdrawal of all support networks were sources of high anxiety and, sometimes, burnout. Participants highlighted that the transition out of the pandemic would present new challenges. They hoped that some of the adaptations made during this time could continue beyond the pandemic. For more information about the project, and to download a summary of the results, please visit the study’s open access wiki: osf.io/ygkw5 8 Your Autism
Good luck to our marathon runners! On 3 October, the London Marathon is returning in a big way. The event organisers are expecting 50,000 runners to complete the iconic route in the capital, and 50,000 more to take on the 26.2 miles virtually, by running their own route. One of our charity’s most prolific runners is Simon (pictured below). The event in October will be his 47th marathon! This is even more impressive, as Simon came to running relatively late in life, at the age of 48. Simon has a few reasons for supporting us: “My wife’s niece, in Venezuela, has Asperger syndrome, and, therefore, autism is very close to our hearts. Unfortunately, knowledge in Venezuela about autism is severely lacking. My late mother was head of the lower school at a special needs school, so I knew about the condition from an early age. We also have several close friends who have autistic children.” Simon, we are so grateful to have you on Team Autism and we are confident you will do us extremely proud come October. You are testament to what hard work and determination can achieve, and you have shown us it’s Interested never too late to take on a am new challenge. in joining Te a e ll our To all our amazing Autism? Se events at runners in this and other fundraising sm.org. www.auti events this year – good olved/ uk/get-inv luck and thank you! ey raise-mon
Diary dates What to do and where to go
23 September 2021 Live online
Autism, learning disabilities and the criminal justice system conference
Join us at the 20th edition of our conference. Topics include preventing offending behaviour, navigating the criminal justice system, and improving outcomes for autistic people and people with learning disabilities. Autistic people and their families or carers ticket, £65 + VAT. Book at: www.autism.org.uk/criminaljustice-conference. On demand after the event, £30 + VAT. For information on how to register for on-demand access only, please contact us by email on conference@nas.org.uk.
11 November 2021 Live online
Autism and education conference
Hear about good practice, current research and personal insight at our Autism and education conference 2021. Topics include mental health and wellbeing, sensory differences, exclusion, emotional regulation and girls in education. Autistic people and their families or carers ticket, £65 + VAT. Book at: www.autism.org.uk/ education-conference. On demand after the event, £30 + VAT. For information on how to register for on-demand access only, please contact us by email on conference@nas.org.uk.
27 November 2021 Online
Annual General Meeting
Simon and his family
We hope to see you at our AGM! There will be updates on our work and campaigns, workshops, and an opportunity to vote on our future work. We’ll be in touch with you nearer the time with all the details and how to register to attend. Autumn 2021 9
My diagnosis
Learning curve
Teacher Virginia Betts’ late diagnosis helped to explain her past. Now she uses it to shape the future for her pupils When and why did you think you might be autistic? I am a qualified teacher and, after 15 years, I left schoolteaching to start my company, Results Tutoring. I noticed I did well with students who struggled because of many forms of neurodiversity, and began to see similarities between the students and myself. I first related to Irlen Syndrome [a difficulty with the brain’s ability to process visual information] and before long I was wearing coloured lenses and having fewer headaches. But it was more than that − I had always felt ‘different’ and felt I ‘acted’ being ‘human’. At a doctor’s appointment, it was suggested I might be autistic, so I pursued a diagnosis. What is being autistic like for you? I recognise that many people struggle; no two experiences are the same. For me, I have a phenomenal memory − I can recall specific events in detail, and have an eidetic [visual] memory for text and facts. I am a whizz with words. I struggle with things that others find easy − like remembering what to buy, or my friends’ names.
Virginia is also a poet and author; her debut collection of short stories, The camera obscure, will be released at the end of this year. Want to share your or your child’s diagnosis story? Email YourAutismMag@nas.org.uk
Although I have good social skills, I get exhausted in social situations and need to recover the next day.
What was the diagnosis process like? I was diagnosed aged 45 by the Suffolk Autism Diagnostic Services. I initially went to the GP – the first said I could not be autistic because I had a job, husband and child, but a different GP referred me for initial assessment after two months. I was then referred to the full diagnostic service and waited around nine months. It was a long interview, but I received the diagnosis at the end. I gave them several pages of information, and what really helped was having my husband with me. I encourage people to persevere if they need answers. How do you help students on the spectrum? Many autistic students struggle because school is often not set up to make them comfortable. Bright lights, busy rooms, smells, embarrassment and challenging social situations disrupt learning. They often flourish in a one-to-one setting, asking questions they are too shy to ask in school. I tailor learning to the individual, and I hope I make it fun, too. Many students improve by two or three grades, as they gain confidence in who they are and what they can do. I try to be a positive role model too, smashing stereotypes and letting people know we are not ‘less’, just wired differently. Autumn 2021 11
Real life
The best days of our lives?
Back scho-tospec ol ial
Emily, 17, begins our ‘Back-to-school special’ by describing how school affects her. Meanwhile, Leeann gives a parent’s perspective…
What is success? Is it good school grades; money; power; respect? Would you do anything to achieve success? I have been told my whole life that to get good school grades, to get a good job, to be successful, I have to go to school. But is the price I have to pay by going to school worth the ‘success’? Imagine sitting somewhere for seven hours a day, five days a week, that made you want to cry. Somewhere so loud it gave you headaches and made you feel sick. Somewhere you always felt on edge. Somewhere you never felt safe. I have had this forced on me since I was five. Is this price worth exam success? School is loud and overwhelming. It is somewhere I struggle to be, but I have had to go for 10 years. That is 13,000 hours of being somewhere that makes me physically unwell. For me, the environment in school does not help me be successful. Many people found lockdown to be isolating and
This change in wellbeing is success, but this is not what is measured 12 Your Autism
Emily thrived in the quiet of lockdown
horrible, but I loved it. I was happy for the first time in a long time, because I wasn’t forced to go somewhere that made me feel overwhelmed, and I didn’t have to pretend to be somebody I wasn’t. I didn’t need to interact with others. I could do my work in my room, where it was quiet and the lights weren’t too bright. I didn’t sit in constant anxiety at the thought of being asked to answer a question. I could just work. Working alone in my own environment made me successful. My quality of schoolwork improved. My relationships with others got better. My mental health improved, along with my sleep. Lockdown has shown me that it doesn’t make sense to force everyone to learn or be tested in the same environment, and in the same way. I am improving at home, yet others will be falling behind. Surely, for me, this change in my wellbeing is success – but this is not what is measured.
Real life
Environment plays a big role in our success, but so do people. Some students thrive when teachers push boundaries. Me? Not so much. It just makes me anxious and upset. However, most people don’t see this because I am very good at hiding it. I am really good at masking my anxieties and stress, so all they see is someone who does well in class and seems normal – whatever normal is. At home I cry myself to sleep, have panic attacks, and stress about school. Providing traditional schooling and then judging students on a ‘one size fits all’, without considering the environment and learning style that suits each student, makes no sense. As the quote often attributed to Einstein goes: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid.” I always measured my success against others. However, now I see that wondering why I couldn’t achieve what another student did is a trap. It’s a lot easier to get good grades when you can hear the teacher over the buzzing of the projector and when you can focus without the light hurting your eyes. This is the challenge for the traditional school system. How does it consider the successes of different pupils, using the same criteria, when the students are taught in the same way and in the same environment – regardless of whether these meet the needs of individual students? As any good gardener knows, “when a flower doesn’t bloom, you fix the environment in which it grows – not the flower”.
One of our charity’s priorities is to increase understanding of autism in schools. As a member, you are supporting this vital work. If you’d like to give a gift towards our Education Rights Helpline, visit www. autism.org.uk/edrights
My mobile rings… by Leeann
My mobile rings at work, my heart stops. Please don’t let it be the school. I close my eyes as I flick open the cover, look down. It is the school. Putting on a brave voice, I answer. “Hi.” “I’m sorry,” comes the reply from the deputy head. “Can you come immediately, there has been an incident.” Dropping everything, with a brief desperate look at my boss, I leave the office. Arriving at the school, I am greeted by: “He’s locked himself in the toilets. We can’t continue to have this behaviour from him. He refuses to talk to staff. He’s disrupting other children. He won’t listen.” At that moment, I’m not listening either. I can hear my child sobbing from the cubicles. The fear in his cries has brought out the protective lioness in me. “Give me a minute,” I snarl at the staff. They retreat outside the door. “It’s OK hunny, just mum now. You are safe. I’m here. We’ll get through this together.” He opens the door and falls into my arms, and we slide onto the stinking bathroom floor. I’m beyond caring as I rock my boy until his pain subsides. This is the third time this week me and this toilet floor have been acquainted. My child is not naughty; he is autistic. “That’s OK,” I hear you say, teachers are trained for this, local authorities provide advice for parents. Some schools do try hard to support autistic pupils, and individuals go above and beyond to make a difference. Training is patchy, however, and some schools shun any child that doesn’t fit the mould. Local authorities are stretched, and it seems the system is designed to shut parents out rather than support them. Voluntary groups and charities are often left to pick up the pieces and steer parents through the SEN minefield. All this time our children are left to suffer in a system that appears to regard grades more highly than the child’s wellbeing. Next time you’re standing at the school gate, look around. That child with the overprotective mother is more likely a child struggling to get through the day, with a mother whose heart breaks every time the school calls.
If you are having similar experiences, our branches, online community and guidance can all support you. Visit www.autism.org.uk Autumn 2021 13
School
A smoother transition How can you make going back to school easier? Suzy Rowland, founder of the #happyinschool project, offers some advice
Suzy Rowland is an author, cognitive behavioural therapist, autism/ADHD specialist coach, trainer and speaker. She founded the #happyinschool project – happyinschoolproject.com – to share deeper knowledge and insight into the issues surrounding neurodiversity in education. In 2020, she published S.E.N.D in the clowns, www.suzyrowland.com/product/s-e-nd-in-the-clowns, an acclaimed handbook for educational professionals and parents of newly diagnosed autistic, ADHD and neurodiverse children.
14 Your Autism
I started writing my book, S.E.N.D. in the clowns, when the buzzword was ‘autism awareness’. My son displayed clear signs of autism for years without a diagnosis. I endured the pain of not being believed and he endured the trauma of many school exclusions. Awareness was – and still is – critical, as many teachers and parents don’t appreciate how autism might affect your child’s learning and behaviour. In spite of greater ‘awareness’, decades of lobbying and the introduction of the Children and Families Act 2014, it’s evident that thousands of autistic, neurodiverse children are still not accepted or adequately supported in their mainstream school communities. I speak from personal experience, as a mother who has seen the impact on my son of not being accepted in his school. Rejection and social exclusion in the early years – which many autistic children face – can lead to complex and debilitating mental health challenges in teenage years and beyond. Schools tend to place a high value on conformity, whereas autistic youngsters can be highly individualistic. Here are a few things to consider that may ease their transition back to school.
Mega transition
September 2021 presents a potential mega-storm of transition anxiety. Many will transition from one year group to another, one key stage to another, or even to upper
School
school or a new school. For young people facing the anxiety of starting an academic year in the aftermath of a pandemic, there is much to consider. Neurodiverse learners will face emotional difficulties they may not have experienced before. Understandably, teachers are keen for all children to catch up on missed learning. However, neurodiverse children, in particular, require consistency and regular calming or physical activities to help regulate their stressed nervous systems.
Having the COVID talk
In spite of the vaccine, COVID isn’t going anywhere, so we need to navigate a world with more hidden as well as obvious threats. Talking to our children about their new reality is critical to them being able to cope better with changing – and sometimes frightening – situations. They require simple explanations and simple plans. The following links provide excellent conversation starters about the pandemic and the impact on your child or teenager’s mental health: Young Minds − bit.ly/ talkingcoronavirus – and Institute of Wellbeing, bit.ly/Institute-Wellbeing. If your child is autistic with a co-existing condition, try not to overload them with too much information. Keep it as gentle as possible to avoid raising their anxiety further.
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capacity to learn is rooted in their sense of certainty and alertness. If their mind is elsewhere, in ‘fight’ or ‘flight’ mode, they can experience physical tension, especially those with co-occurring conditions, such as dyspraxia or attention deficit disorder. Regular movement breaks can assist improved engagement and learning.
The wellbeing way forward
Is there a sensory room or another space designated for calm and quiet? This is especially helpful when learners are undiagnosed. Lots of parents worry about making the ‘wrong’ schooling decision, probably because our children evolve faster
Make the case for adjustments
Adjustments can make the difference between engagement and non-engagement, especially in the early weeks of transition. Your child’s emotions may flip-flop between excitement and trepidation as they approach the return to school. The signs of rising anxiety levels include increasing hyper-focus; resistance to change; irritability; tearfulness, and difficulty sleeping. Think about how the school environment might need to adapt to help them settle in quickly.
Academic pressures
While there is a need to catch up on work missed because of the pandemic, a child’s
Suzy and her son Jake Autumn 2021 15
School
Ideas to add to your transition plan, in conjunction with the school: ● Social stories to support areas that could be overwhelming (journey to school, new teacher, asking for help); use ‘what if?’ questions ● List of triggers and calm-down strategies; list of interventions that worked at previous school ● Map of the school. Location of desk (by the door, window, canteen, near the teacher)? Location of toilets, any fixed rules – can they leave, if necessary, during lessons? ● Lunchtime arrangements: do all children need to go outside? Who monitors the children? What’s the procedure if something goes wrong? ● Who does your child speak to if they’re upset or being bullied?
● List of allergies and who administers medication ● Mobile phones: where are they allowed and when can your child use it? ● Changing facilities – are there cubicles or are they open plan? ● How does your child show distress? ● School rules on hair, jewellery, shoes; willingness of school to allow adaptations? The success of your child’s transition plan depends on the skill and compassion of those around them. Invest time in building a good relationship with support and teaching staff. Review the transition plan a few weeks after the start of term.
than the school system can keep up. I urge you to start a conversation with someone you suspect is facing similar difficulties. It’s a great way to build the support and knowledge base you need as you navigate the education maze.
School avoidance
Unfortunately, many autistic, neurodiverse young people find the pressures of school too difficult and opt out completely, resulting in feelings of distress for themselves and their wider family. If you’ve experienced this, please contact me in confidence, as I would like to include young people’s voices and experiences in a new book. hello@happyinschoolproject.com
Suzy and Jake when he was younger
We have lots more transition advice at www.autism.org.uk/transitions. Our charity is also launching a new award to celebrate good autism practice in mainstream schools. Find out who the first winners will be, and more about the new award, in our winter issue. 16 Your Autism
iStock.com/ FatCamera
Support
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Getting support at school It can be difficult to know what extra support your child is entitled to at school. Liesel, an adviser on our Education Rights Helpline, answers your questions Liz
Q. How can I get support for my child, who has SEN support but not an Education, Health and Care Plan (EHCP)? All the school’s resources, including teaching assistants, are focused on those with EHCPs. Liz 18 Your Autism
EHCPs only apply in England. Similar documents apply in other nations within the UK – Statements in Northern Ireland and Wales, and Coordinated Support Plans in Scotland. All state-funded schools in England have a legal duty to ‘use their best endeavours’ (do their best) to provide special educational provision for all children with SEN and disabilities, even if they do not
have an EHCP. This can include using teaching assistants to support children without EHCPs. Schools in Wales and Northern Ireland have similar legal duties, and, in Scotland, children’s Additional Support Needs must be met. Q. My son currently receives 1:1 support from a learning support assistant in a mainstream school,
Support Yfke but she is not specifically trained in autism. Is it possible to have a specialised learning support assistant in a mainstream school, or are specialised teachers and teaching assistants only available in special schools and mainstream schools with a resource provision unit? Yfke There is no legal requirement for learning support assistants or teachers in England, Scotland or Wales to have specific training in autism. In Northern Ireland, parents can request additional staff training if it is required to meet a child’s assessed needs. All schools and local/education authorities must do all they can to make sure the provision that is made for a pupil meets their special educational or additional support needs. In England, if your child has an EHCP, at the next annual review you could request an amendment to the plan to specify that your child needs an assistant who is trained in autism. Our charity offers a range of training options. Perhaps you could suggest the school sends staff on them. Q. Our autistic daughter is in year 5. We’re applying for an EHCP because her school-based anxiety has a huge impact on her general wellbeing (including regular panic attacks and suicidal ideation). We feel that increased provision could be instrumental in preventing another breakdown. School tells us
our daughter doesn’t need an EHCP because her learning isn’t affected and (being an excellent masker) our daughter doesn’t display serious needs in the school environment. Should the local authority provide us with an EHCP based on poor mental health because of profound school-based anxiety, or would our daughter’s learning need to be affected to be eligible? Marlijn The SEND Code of Practice in England outlines four broad areas of need: cognition and learning; communication and interaction; social, emotional and mental health difficulties; and sensory and/or physical needs. The legal test for a local authority in England when considering a request for an EHC assessment (the process that has to happen before an EHCP is issued) is whether the child may have special educational needs that may require special educational provision to be made through an EHCP. Throughout the UK, schools and local/education authorities must consider all of a child’s additional needs, so the focus should not just be on a child’s academic achievement. Q. Shouldn’t support be continued during breaks and playtime? The school thinks about lesson times, but I have pointed out demands
are just as high during breaks. This is a time my son often gets into trouble because he is trying to manage social interactions, but his support person or trusted staff may not be around him. Heather Lunch and break times can often be the most challenging times at school for autistic pupils, because they may struggle with the lack of structure, feel isolated because of difficulties with making friends and joining in games, or be the subject of bullying. Schools should offer support throughout the whole of the school day to ensure that all pupils’ special educational or additional support needs are met, and that their safety and wellbeing are assured. This may mean providing a trusted adult to support them during break times at school. Q. How can a bright 14-year-old on the autism spectrum with sensory issues be supported to sit GCSE exams? Christine Schools can apply for special arrangements to be put in place for students taking national exams. Schools must show why these arrangements are needed, and may be required to provide evidence to the exam boards, such as a specialist teacher or educational psychology report. One arrangement that may be suitable
There is no legal requirement for learning support assistants or teachers to have specific training in autism Autumn 2021 19
Support
iStock.com/monkeybusinessimages
Schools should offer support throughout the whole school day
for a student with sensory needs is for them to have a separate room and invigilator for the exam. Q. Would a child with an autism diagnosis be entitled to more time when completing mainstream school exams (such as A-levels)? Will the examiner marking their paper have been made aware of their diagnosis and that autism is a ‘lifelong developmental disability’? Julia
discriminatory to mark them as unauthorised? Sadhia
It is possible for schools to apply for special arrangements for national exams, and extra time is one of these. There are other arrangements that can also be made, such as a reader, a scribe, or use of assistive software. Appropriately applied access arrangements should ensure autistic candidates are given equity when sitting national exams. It is unlikely the examiner would be aware of the candidate’s diagnosis, as papers are marked anonymously.
Q. What can parents do if they feel they are not being listened to, or their child’s needs are not being met? Sadhia
Julia
Q. Many children have absences because of anxiety related to autism. How should schools mark this in the register? Is it 20 Your Autism
Schools in England should authorise absences because of illness unless they have genuine cause for concern. The Equality Act requires all schools in England, Wales and Scotland to ensure that they do not discriminate against disabled pupils. Similarly, the Disability Discrimination Act applies to schools in Northern Ireland.
Parents should first speak to the
Special Educational Needs/ Additional Support or Learning Needs Coordinator, or pastoral teacher about their concerns. Q. What can parents do if they suspect their child is on the autism spectrum but school feels differently? Sadhia Schools have a duty to use their best endeavours to provide additional support, or special educational provision for all children with special educational/ additional support needs and disabilities. This is not dependent on the child having a specific diagnosis. Parents can request a meeting with relevant school staff to discuss their concerns.
About our Education Rights Helpline The Education Rights Helpline can provide general information about educational rights and entitlements, as well as advice on specific topics such as getting extra help in school, assessments, education plans, reviews or school transport. Call 0808 800 4102 or fill out our online enquiry form at www.autism.org.uk/ education-advice-line For more information and guidance, visit www.autism. org.uk/education
Interview
“I love my beautiful, autistic brain” We caught up with Holly Smale, award-winning author of the Geek Girl series and The Valentines trilogy. Holly was diagnosed as autistic last year Why did you seek a diagnosis?
I’ve known I was ‘different’ since I was three; since my first day of nursery. That alienating, confused feeling carried on throughout my life, and caused a lot of trauma, pain and distress. There was a huge sense of isolation from myself, and exhaustion from what I now realise was constant ‘masking’. By the time I hit my late 30s, I was in pieces. I had a huge meltdown during the lockdown. The isolation gave me 22 Your Autism
the time, space and motivation to finally seek answers. I was diagnosed as autistic last year, aged 39.
What is being autistic like for you?
I’ve never not been autistic, so I’m still figuring that out. Simplistically, I’m very sensitive – so lights, sounds, textures, tastes, emotions are all very vivid for me, sometimes in a beautiful way, but
they can be difficult to process and overwhelming. My brain is very focused and linear, which means I can become completely absorbed in things I love, to the exclusion of everything else, including my own body’s signals. I struggle to understand the world and communicate with it; my way of seeing things, thinking and speaking is so unlike that of non-autistic people.
Interview
I’ve known I was ‘different’ since my first day of nursery Being autistic isn’t always easy, but I wouldn’t change anything. It is who I am. I love my beautiful, autistic brain.
Autism is often missed in women, girls and non-binary people. Why do you think that is?
The history of autism research was focused on boys, so anyone who didn’t fit that mould was excluded from the narrative. That still lingers, even now. Gendered responses mean my meltdowns became ‘drama’, my shutdowns ‘sensitivity’, my fear of dirt ‘neatness’. So many girls, women and non-binary people have gone undiagnosed as a result of gender expectations, and it needs to change.
Since you revealed your autism diagnosis, have you noticed a change in the way people have reacted to you?
There’s still a lot of misunderstanding around autism. I’ve had people assume I ‘don’t have empathy’ or that I ‘can’t laugh’. Some people talk to me more slowly and others are dismissive or rude. Others are fascinated and want to know more. I’m hoping that the more we talk about it, the fewer inaccurate assumptions will be made. The autistic community itself has been so warm and welcoming.
How did you discover your love of writing?
I’m hyperlexic, so I’ve loved words and books all my life. My mum used to read Tennyson over my pram. When I was three, I fell in love with The faraway tree and carried it with me everywhere, like a teddy bear. Once my mum had explained how a book was created and what an author was, I knew that was what I wanted to do for the rest of my life. I’ve been writing ever since.
How did the Geek Girl series come about?
In 2008, a good friend suggested I write about my experience as a teen model. It seemed like a horribly boring idea, but I went home and impulsively wrote: “My name is Harriet Manners and I am a geek.” It was a true ‘lightbulb’ moment. I realised I didn’t want to write about modelling; I wanted to write about how I had felt as a child who couldn’t fit in, no matter how hard I tried. I wanted to write about a girl who was struggling with being bullied and perhaps experienced the world in the different way that I did. I didn’t know I was actually writing about what it felt like to be an autistic teenage girl until a decade and eight novels later. In many ways, it was through Harriet that I got my own diagnosis. People have been asking me if she’s autistic for years. It turns out: yes, we both are.
What were your experiences of modelling like? Like Harriet, I was ‘spotted’ on a school trip at the age of 15. In my naivety, I believed that modelling might make me fit in better, and
Autumn 2021 23
Interview
somehow stop my peers bullying me. It didn’t. I also have dyspraxia, so I spent the following two years falling over, ripping things, freezing, feeling confused, struggling with the lights and cameras, and having meltdowns backstage. It was hard, but it was also an adventure and gave me the inspiration for my books, so I don’t regret a minute of it.
Why do you think representing autistic characters – particularly autistic girls – in young adult literature is so important?
The purpose of art is, as Hamlet says, ‘a mirror held up to nature’: to see the world and ourselves reflected in the stories we tell. Books aren’t just stories; they’re a way of communicating with each other, and of sharing our experiences, our thoughts, our emotions. It’s the only way we really get to be other people, as those stories are told. This goes especially for minorities, such as autistic girls. We deserve to both see ourselves and to be seen.
Do you face any specific challenges as an autistic woman in the creative industry?
Stories by and about autistic people can be seen as ‘niche’, ‘genre’, or just ‘about being autistic’. In reality, we create stories as vivid, as exciting, as fun, as generally interesting as any non-autistic author. I think it’s starting to change now, but the idea that autistic stories aren’t and can’t be mainstream and loved by everyone needs to be discarded. 24 Your Autism
Let your individuality shine through. Autistic writers have so much brilliance to offer; embrace it and let it light up the world You have an MA in Shakespeare. Do you have a favourite Shakespeare quote? I always identified with Shylock’s speech in The merchant of Venice: “If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?” Although it’s about his ostracisation as a Jewish person, it always moved me immensely. As a bullied child who felt ‘other’, Shylock’s demand to be treated like a human felt familiar, along with the distress, pain and rage that a
million micro-aggressions can incite over years.
Any other favourite writers? I love Kate Atkinson, Maria Semple, John Steinbeck and Daphne du Maurier.
Do you have any tips for aspiring autistic writers?
Harness your uniqueness. We’re naturally great at focusing, so use that to your advantage; find something you love and are excited by, and throw yourself into it. Similarly, when it comes to narrative voice, lean into your individuality. You don’t experience the world in the same way as anyone else, so make the most of it, instead of trying to write like others. Most of all, have fun with your writing and let your individuality shine through. Autistic writers have so much brilliance to offer; embrace it and let it light up the world.
Are you working on any other creative projects at the moment?
I feel like my autism diagnosis has broken open a box inside me, so now I’m going to have fun by writing in as many different formats as I possibly can.
Holly’s novel Love me not (part three of The Valentines trilogy) is now available. Buy your copy here: bit.ly/Holly-Smale
Employment
Autistic entrepreneurs Mark set up a martial arts academy
I went to art school and started working as a graphic designer, but I found office work very hard going, as I struggled with interpersonal skills. I don’t react to things the way people expect me to and I sometimes find it hard to understand why other people act the way they do. So, I changed direction – radically. I started working as a nightclub doorman when I was 17 (I fibbed about my age) and I worked the doors for 20 years. I became qualified in bodyguarding and did some close-protection work. I have been teaching martial arts since 1987, but, in 2000, my instructor encouraged me to turn professional. I was at a stage in my life when I needed a change of direction. So, I set up The Best Defence, a specialised martial arts centre where we offer classes for children and adults. At first, the main challenge was funding. Starting from scratch, I was pretty much flat broke. I started small, with minimal equipment, but I had a really good reputation, so I built things up as the classes grew. I studied marketing during my graphic design degree, but found learning about accounts very difficult. I could read and write by the time I went to primary school, but numbers and maths just don’t compute for me at all. With The Best Defence, I get to do something that has been a lifelong passion for a living. I work by myself mostly, and what 26 Your Autism
Stuart Fraser at RebelFox Creative
Mark Davies and Abby Browne talk about setting up their own businesses. Robyn Steward explains why self-employment can be a good option for autistic people
Mark’s top tip:
Think about what you are good at and what you I do has allowed struggle with, and try to build me to travel all a support network over the world, beforehand to help. It will be teaching and hard work, so be prepared for training. Best setbacks and have people to of all, it lets me support you throughout. be there for my son. Eli is autistic and has learning difficulties and epilepsy, and I’ve been able to spend lots of time with him. I have a lot of autistic students. When I took up martial arts as a child, I liked the repetition and emphasis on trying to develop perfect technique, and my autistic students are the same. No matter how rubbish a day you’ve had, or how stressed you are, there is solace and peace in the training. If you’re like me and are quite solitary, and you struggle in normal work settings with interpersonal interactions, being selfemployed, doing something you enjoy, is bliss. It’s not easy, and at the end of the day it is all on you; you determine whether you prosper or fail. bestdefencearbroath.com
Employment
Abby started an art business
My name is Abby and I am autistic. I had a very late diagnosis – I was 40 – but, nevertheless, finally understanding why I always felt different, and why I struggled so much to connect with society, has really helped. Perhaps it was my way of escaping, or trying to portray to others how I experienced life, but I took to art from a very early age. All I ever wanted to do was draw and paint. Creating art took me to a place where I felt relaxed and comfortable – somewhere that left the confusion and fear behind; where I could express myself as I wished to. Having so little understanding of why I felt and thought differently for so many years led to an addiction to alcohol. I will not blame it on autism or the lack of a diagnosis; at the end of the day, I’m an alcoholic, but one who happens to be in recovery one day at a time. Stepping into recovery meant my artwork
changed. It became brighter, more colourful and vibrant. I now look to paint the beauty and light within life as I see it. This led to a large increase in followers on social media and the creation of my own website. Slowly, I began to reach my dream of selling my art, and now I have my own little studio and gallery. At present, life can sometimes still be a struggle. I am selfemployed, so money does not always come in on a regular basis. But I am doing what I love, I’m earning, and I’m now selling in Europe and the USA. Taking the gamble to start my own business held a lot of fear, but I am lucky to have a supportive partner, who is the ‘engineer’ while I’m the ‘creative’ – which works extremely well in any business. I finally feel I am on the path I am meant to be on, and starting out for myself has increased my self-confidence and my belief in my own worth. www.abbybrowne.art
Abby’s top tip:
For any autistic person considering starting their own business, I would simply say try it with real belief: ‘Fear knocked at the door. Faith opened it. There was no-one there.’
Autumn 2021 27
Employment
Autism trainer, author, musician and our ambassador, Robyn Steward, has been self-employed for more than 10 years.
For me, self-employment had always been a way of getting by. I wasn’t that interested in making millions; I wanted to pay my bills and save for a pension. Many disabled people who receive benefits are not allowed to earn any money, or can only earn a certain amount. As a consequence, self-employment is not always considered for disabled people on benefits; why would they need to work? Except work is not just about the money, is it? Many jobs are choices made for other reasons – for example, being a teacher, artist or musician. Often, people choosing these roles are getting something back that’s not just money. Work offers people the opportunity to be part of their community. For example, Brad is a man living in Alberta, Canada, who has an intellectual disability and he loves building things. He goes to a day programme and his parents wanted him to do something else he enjoyed. They started Made by Brad, a business that sees Brad being taken to people’s homes and building their flatpack furniture. Brad gets paid for the work he does. Of course, there are many autistic people like myself who do not also have a learning disability. Self-employment here can also be beneficial. It uses the skills we have, but also gets around issues that can be difficult for autistic people in the workplace. This includes the sensory issues of an open-plan office, and social obligations that cost large amounts of energy. I have struggled with traditional employment and my patchy profile of abilities. This made education hard to access and, later, made it harder to meet the criteria for jobs. There are many autistic people who are very well-qualified but who can’t get a job because of lack of experience. Self-employment can offer a way of gaining experience at your own pace. 28 Your Autism
Robyn’s top tip:
Lead confidently: making the decision to move to cloud-based bookkeeping or to make a homemade spaceship on a stage were things other people doubted would work, but they all did. You are the one steering your business.
Giveaway
The autism-friendly guide to self-employment by Robyn Steward (Jessica Kingsley Publishers) is a guide to coming up with self-employment ideas and formal business set-up. It features stories of autistic people who are self-employed, as well as links to further information. We have two copies to give away to our members. For your chance to win, email your details to YourAutismMag@nas.org.uk by 20 October quoting ‘self-employment’. The winners will be announced in the next issue.
Advice
Catastrophising If you constantly think the worst will happen, how can you control these feelings? Purple Ella explains how she manages her catastrophising Catastrophising is an anxiety-driven assessment of a situation that focuses on the worst possible outcome. For example, I tend to worry about safety. So, if I travel on a train, or drive my car on a motorway, I worry about the potential of having an accident. I start to wonder whether the train has been safety checked recently and, if not, what might go wrong. Or I worry about a tyre blowout or engine issue as I drive my car on the motorway. Then I imagine the accident that could occur as a result, and any injuries there might be. This leads me to worry about who would care for my children while I recovered, and whether this period of being cared for by someone else could have a long-term impact on their wellbeing. So, before I’ve even left my house, in my mind my journey has already ended with life-changing injuries, and the associated psychological damage of my children. Even though these are extremely unlikely outcomes. Because autistic people tend to have higher levels of anxiety, catastrophising is common for us. Since receiving my autism diagnosis, one of my highest priorities has been to find strategies that reduce my anxiety. In turn, this can help to reduce my catastrophising. In my experience, reducing my anxiety means living a life that suits my neurology; making changes to my lifestyle that mean I’m less likely to become overwhelmed or overloaded. Here are my tips for reducing anxiety and catastrophising: Purple Ella ... living a life that suits her neurology 32 Your Autism
1. Energy accounting. Because the world is not designed for neurodivergent
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Advice
people, we tend to become overloaded and fatigued more easily. I recommend managing your energy by using a technique, co-developed by Maja Toudal and Dr Tony Attwood, called energy accounting. To use energy accounting, you monitor which activities reduce and which rejuvenate your energy levels. Then you balance your days and weeks between these two types of activities with the aim of maintaining a stable, in-balance, energy account.
2. Mindfulness. Mindfulness focuses on living in the present moment rather than being partly engaged in worrying or thinking about the past or future. I learned to practise mindfulness using the Headspace app but, like many autistic people, I struggled to commit to sitting still doing nothing. So now, instead, I focus on mindful activities – practising mindfulness while doing gentle activities such as walking, hobbies, or everyday activities.
3. Find external perspective. If I notice myself catastrophising, I find it helpful to talk to a friend about the situation. Taking my worry out of my head and hearing someone else’s perspective on the situation can reduce my anxiety. It’s important to find someone who will engage in considering the probabilities of your fears versus the likely outcome, rather than someone inclined to tell you “it will be OK, don’t worry”. This is because autistic people don’t tend to be comforted by empty assurances.
4. Anxiety charting. As an autistic person, it
can be tricky to identify differing levels of anxiety. Our anxiety can feel like a 10 out of 10 all the time. I’ve found charting my anxiety levels for a period (I’d recommend a month) helpful in learning to cope with lower levels. It makes the levels of anxiety more manageable. It also helps you to know when you might need to seek external help to manage higher levels. I’d recommend charting your anxiety on a scale of nought to 10 each day. This will help you learn to identify levels and patterns around what tends to make you anxious.
5. Monitor your catastrophising. Noticing
and monitoring your catastrophising can help you to learn when you are likely to catastrophise, as well as build up a bank of evidence that the outcome is rarely as bad as you imagined. I’d suggest making a note of what you catastrophised about, what you thought the outcome might be and what the actual outcome was. Hopefully, in time, this will help to reassure you that the worst-case scenario isn’t likely to happen.
Read more at www. autism.org.uk/anxiety Hear more from Purple Ella at https://vm.tiktok. com/ZMdxtmruS/ and www.instagram.com/ purpleellaandcoco/ Autumn 2021 33
Advice
Avoiding an admission Kenna Mannix, from our Autism Inpatient Mental Health Service, explains what to do if you or a family member are at risk of being admitted to a mental health hospital. Over the page, Sharon Clarke talks about what happened to her son, Ryan, and how she advocated for him While the Mental Health Act’s current definition of mental disorder includes the full range of spectrum conditions, autism itself isn’t a mental health condition. Autistic people can and do develop mental health problems. Sometimes autistic traits or behaviour patterns can be mistaken for mental health conditions. We recognise that behaviour is often a way of communicating, with both a cause and a purpose. It is, more often than not, a person’s response to an unmet need, but behaviour alone shouldn’t usually lead to a hospital admission. We know just how important preventative support is for autistic people. Without this, they can spiral into a mental health crisis, which can lead to a breakdown of support, inappropriate hospital admissions, or even contact with the criminal justice system. We also know how much autistic people can be deeply affected by changes to their lives or routines. Changes to care, or a bereavement, for instance, can trigger someone into crisis and put them at risk of admission to an inpatient mental health hospital.
Step one: Get on the Dynamic Support Register
If you or your loved one is at risk of a mental health hospital admission (or being sectioned under the Mental Health Act as it’s often referred to), first make sure they are on their local area’s Dynamic Support Register. This might be called something different where you live, but it’s a record every area should keep of people who might, at some point, need emergency help and intervention. To check whether your loved one is on the 34 Your Autism
list, or to ask for them to be added, you should contact their local Clinical Commissioning Group, known as a CCG. Some CCGs have asked local services to manage this list on their behalf. They’ll ask you questions about them and their wishes, their current support, and their history.
Step two: Ask for a Care and Treatment Review
Once they’re on the Dynamic Support Register, you can ask for a meeting to review their current care and support. If they are a child or young person, this meeting is called a Care, Education and Treatment Review (CETR). For adults, these are called Care and Treatment Reviews (CTRs). The person themselves, their family, carers or anyone else involved in their care and support have a right to ask for a CTR, but it won’t go ahead without your loved one’s consent. Send the request for a CETR or CTR to your loved one’s Care Coordinator. If they do not have a CC, then to the local commissioner, who will consider the request and decide the best course of action. We suggest making the request in writing, just to make sure you’ve got a record. Before COVID restrictions, a CTR would happen face to face and could last most of the day. Currently, however, they continue to happen virtually. A local commissioner, an independent clinician and an independent person with lived experience, known as an Expert by Experience, will meet. The panel will look to see if there are any gaps in the care and support your loved one
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Advice
is getting, and any support they may need to prevent a crisis. You, your loved one and the people involved in their health, social care and education will think about what kind of things need to be put in place to help them stay safe at home and get the help they need. The CETR/CTR panel doesn’t make decisions about whether or not a hospital admission is appropriate; that remains the responsibility of clinicians. If there’s not enough time to organise a full community CETR/CTR meeting, a smaller meeting – known as a Blue Light or Local Area Emergency Protocol (LAEP) – might take its place, as this can be arranged sooner. While, for most, a hospital admission can be avoided, for some, an admission will be the only way to keep them safe.
Step three: If admitted to a mental health hospital
If your loved one is an adult and is admitted to an inpatient mental health hospital, a full CTR should be arranged within four weeks of their admission and every six months thereafter, if they’re still an inpatient. If your loved one is a child or young person, this should be held within two weeks of admission, and every three
It’s important to know that statutory guidance, such as the Mental Health Code of Practice, says that, wherever possible, an autistic person should get the care and treatment they need at home, in a familiar environment months from the last CETR, while they are still an inpatient. It’s important to know that statutory guidance, such as the Mental Health Code of Practice, says that, wherever possible, an autistic person should get the care and treatment they need at home, in a familiar environment. It can be useful to read the Mental Health Code of Practice (bit.ly/mental-health-code) to help you understand what the mental health professionals should be doing to support your loved one. For example, it says that practitioners working with or detaining autistic people should have relevant specialist training and experience. Autumn 2021 35
Advice
Sharon and Ryan’s story My son Ryan is 32. He had a normal childhood, but, aged 17, he went into psychiatric services. He was quickly diagnosed with schizophrenia and, in 2012, he was moved into a forensic hospital, and has been at several such hospitals around the country. At his current placement, he has endured regular and long periods of seclusion, the longest being four and a half months. He was restrained, which has resulted in broken bones, and was placed on no leave until 2020; he wasn’t even allowed to leave the hospital grounds. These and other practices have all led to his presentation deteriorating. However, one positive thing was that, in 2018, aged 28, he was diagnosed instead as autistic. This led to him being included on the Transforming Care programme. He was given a consistent core team of people to look after him, although still kept in longterm segregation. I assumed this would lead to his release into the community but, despite promises, months and then years went by, and there was no progress in moving Ryan. An independent care treatment review was damning of the hospital and its practices. I had been trying to publicise this for many years without any interest, but then something did happen. A fellow mum of an autistic girl suggested I go on Twitter. Soon after, my tweets were noticed by the health team at Sky News. Ryan and I ended up as the headline story on the national news. Almost immediately, plans for his release began. Finally, after more hurdles than you could ever imagine, Ryan is due for release to his own home with a bespoke package of care this September. For anyone in the same situation, you must never give up advocating for your family member. Get as much publicity as you can; I find mental health hospitals do not like the spotlight of publicity and, in my case, they quickly agreed that Ryan was in the wrong setting. Local and national publicity is all valuable. I also involved my local MP; Ryan’s
Sharon with her son Ryan (right)
case was even mentioned in Parliament in a recent debate. I engaged the help of a solicitor and national charities, and they helped by making sure that Ryan was going to be discharged to his own home, not another sideways move to another mental health facility. Both the National Autistic Society and Mencap have been brilliant, and supported me with a friendly voice to talk to when I was losing hope. If you are in a similar situation, stand up and be heard; never settle for second best. Get as much help and publicity as you can, and your loved one can have the future they deserve.
Find out more You’ll find lots of information at www.autism. org.uk/inpatient-mental-health-hospitals, including tips on avoiding a crisis. Contact the National Autistic Society’s Inpatient Mental Health Casework Service at www.autism.org.uk/inpatientsupport In July, the Government confirmed it will change mental health law in England and Wales. For autistic people, this includes: • changing the definition of ‘mental disorder’ so it no longer includes autism • introducing a duty to provide adequate community services • making CTR actions enforceable. Find out more at www.autism.org.uk/ change-to-mental-health-law Autumn 2021 37
Notebook
Everything you need to read, do or see
Drama queen
AUTHOR: Sara Gibbs PUBLISHER: Headline PRICE: £10.99 VERDICT: Full of insight This is a must-read for anyone diagnosed late or who has ever questioned whether they are autistic. It is well written and explains the difficulties you can go through in life trying to figure out who you are and where you fit in. As someone who was diagnosed later in life, it helped me to understand myself better. This book is full of insight and shows that we all need to be accepted for who we really are, not who we think we should be. Kelly Glen, Your Autism magazine reader
Giveaway
We have a pair of Spectra Sensory Clothing’s school trousers and a shirt (see page 41) in your chosen size to give away to one of our members. If your child is younger than primary age, Spectra can make them jogging bottoms and a T-shirt. For your chance to win, email your details to YourAutismMag@nas.org.uk by 20 October quoting ‘school uniform’. The winner will be announced in the next issue. The winners of last issue’s competition are Beryl Cunningham, Michael Taggart and Dawn Hill. They each get a copy of Grace Venters’ memoir, The phantom killer and her autistic son: a mother’s journey to love and acceptance. The winners of Supporting autistic people with eating disorders, edited by Kate Tchanturia, are John Gorham and Julia Lee-Thorp. Congratulations!
Goalkeeper: Games, secrets, epilepsy and love
AUTHOR: Peter Street PUBLISHER: Spondylux Press PRICE: £11.99 VERDICT: Beautifully written and evocative Peter is an autistic author and poet who only received his formal autism diagnosis aged 66. He was, however, diagnosed with epilepsy aged 15. This memoir is set in the 1950s and 60s, and covers Peter’s childhood and teenage years. As Peter said in our ‘Stories from the Spectrum’ interview: “It never occurred to me that I was autistic, because I was born in the 1950s and autism wasn’t spoken about then.” Looking back now, the clues were all there. When speaking of his childhood, he repeatedly says: “I was alone, but not lonely.” He also describes difficulties in school, bullying and escaping to the boys’ toilets. And playtime to him was “a massive beast hurrying from one side of the school yard to the other, monstering round and round, side to side, with its 40 pairs of legs. What I imagined it was like being in the middle of a tornado.” But he finds some relief in his passion for goalkeeping. Peter has written a vivid and moving book that will transport you back in time. Suzanne Westbury, Editor of Your Autism magazine
Autumn 2021 39
Notebook
Queerly autistic: The ultimate guide for LGBTQIA+ teens on the spectrum
AUTHOR: Erin Ekins PUBLISHER: Jessica Kingsley Publishers PRICE: £12.99 VERDICT: Should be in every school/college library This is a very inclusive guide for any autistic person, no matter whether they are LGBTQIA+ themselves, or for family and friends to support them. As a family with two children who are autistic and LGBTQIA+, this book is like the gold standard of
support/understanding and is very informative. The highlights were definitely the chapter about bullying and how to deal with it, and all the links to UK webpages, videos and support organisations. I would recommend Queerly autistic to anyone; it would help parents and teachers or other professionals. It belongs in every school/college library and home with a young person identifying as LGBTQIA+. I cannot express how highly I recommend this book. I am even going to write to the author to thank her because it opened a doorway of conversation and understanding between my son and myself. Alexandra Boyd, Your Autism magazine reader
Our six favourite… autism-friendly clothing ranges
1
Born Anxious
Born Anxious organic clothing aims to be as comfortable as possible for autistic children and adults. There are no annoying labels in the clothes. Instead, a recycled information postcard holds the care instructions. The range has great collaborations with Purple Ella (see pages 32-33) and Thomas Henley. www.bornanxious. co.uk
2
M&S
Originally developed with our charity, the M&S Kids Easy Dressing range is a must for the new school year. Fiddly zips or buttons and itchy internal labels have been removed to make dressing easier. www.marksandspencer. com
3
All-in-One Company
Our North Northumberland Branch worked with The All-in-One Company to create the Sensory Onesie, sewn in a way that makes seams
feel seamless, and 5% of all sales are donated to the National Autistic Society. www.the-all-inone-company.co.uk/shoponesies/sensory-onesies
people look good, feel good and do good. 10% of profits from sales are donated to the National Autistic Society. www. autismthreads.co.uk
4
6
Spectra Sensory Clothing
Spectra was set up by Meta Auden, whose daughter is autistic. It sells school uniform, seamless socks, tieless shoelaces and more. www. spectrasensoryclothing. co.uk
5
Autism Threads
With subtle slogans to help people understand autism, Autism Threads’ clothing aims to help
JettProof
JettProof supplies calming sensory clothing and underwear for autistic children and adults. www.jettproof.co.uk We’re working with Mattel on a new Thomas & Friends clothing range for autistic children, coming in April 2022. Watch this space!
Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
Autumn 2021 41
Readers to the rescue!
Post your problems or answers on Facebook at the National Autistic Society members’ group or email YourAutismMag@nas.org.uk
Q
My nine-year-old son is very good at masking all the things that upset him while at school. But it’s so hard for him to hold it together all day that, at home, his behaviour is distressed. What can we do to help? Anonymous, via our online community
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For extensive My three autistic children all information and mask. At school they are If your son is distressed on a guidance about articulate, hardworking and regular basis, he might need autism, visit our polite, while at home they will scream, to find something sensory website: autism.org.uk fight, have meltdowns and be and relaxing to help him to regulate. This dysregulated. could be a case of stimming or something Giving them time to do what they want more structured, such as talking through his after school helps. We have also found talking day using visual prompts or a storyboard. As a about autism helps. Two of my children listen to SEN teacher, I have found a reflections sheet effective for Headspace, which enables them to relax. Having pupils to say what they have learnt, how they have realistic expectations of them in the evenings also exercised, what they are proud of and what they have helps. Sometimes this means turning a blind eye to found tricky. Hopefully, the school can keep you informed low-level disruption or trying to remain very calm. of patterns if your son is a bit more reluctant to join in Talk to the school so they can try to limit the things with lessons or is less motivated by some activities. that will be causing the most stress. If your son can This will help to form a picture of why he is distressed have a safe space to go to, or some time out, it when he comes home. might help. If you are still worried, you Tamsin Grimmer can contact the school’s SENCO to arrange an observation by them or an Thank you Tamsin. You win a copy of Avoiding anxiety educational psychologist. in autistic children: a guide for autistic wellbeing, by Holly Cannon-Taylor Dr Luke Beardon.
Help me next!
Our daughter is a wanderer. She will leave if she is upset, bored or angry. We know how to prevent this from happening, but she also wanders when she is happy. We can now track her location on her phone, but she often leaves it. What can we do to help keep her safe? Anonymous, via our online community 42 Your YourAutism Autism
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Snapshot
I’m an… Eddie Stobart expert
Fiona Jones writes about being an Eddie Stobart fan, how it helps her on journeys, and having a lorry named after her
I’ve been interested in Eddie Stobart lorries for a long time. I’ve been a member of its spotters’ club for nine years. I chose to join because I love looking at the lorries to spot the girls’ names when I am out and about. It makes travelling easier and more enjoyable. I like the green and red colours on the lorries. That’s what attracted me to the company in the first place, as they were always smart looking. On a tour to their old depot in Carlisle, I got exclusive access to see behind the scenes. I even got a chance to sit in the cab
of one of its lorries. I was given lots of goodies to keep. This was one of the best experiences I’ve ever had and I will remember it for years to come. The staff got me as close as they could to all the Eddies [lorries] and I took lots of pictures. I loved watching the documentary, Trucks & Trailers, on Channel 5 – just learning about the lives of the truck drivers, seeing the highs and lows of that job, and I enjoyed watching them pick up and drop off loads. I liked hearing about the people they met on the road, too. I had another lovely thing happen to me from Stobart. Because I am a member of the spotters’ club, I got a chance to apply to get my name on a truck. I had to wait six years. And then, just days before my birthday, I got a letter to say my name, Fiona Susan, had been officially accepted and recognised, and put onto a truck. I also got a certificate to mark the day she joined the official fleet as a working vehicle. I get a fleet book from the spotters’ club, so I can log all the lorries I see when I’m out and about. I have bought many scale models and I’ve got notepads and other products in my bedroom on display. Of course, they remind me of the real things, so I like seeing them on my shelf. My next ambition is to spot my lorry, Fiona Susan, and get a picture with her. My hobby brings me a lot of happiness and I wouldn’t change a thing.
Do you want to share your achievements and passions on this page? Email us on YourAutismMag@nas.org.uk Autumn 2021 43