YOUR Winter 2021
Sam Bailey
Knowing your rights Suzanne and Callum’s story
Fighting for her son’s education
Plus
Money skills, finding friends, and getting ready for Christmas
YOUR
Sam Bailey
Winter 2021 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
22
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 Winter Vol 56, No 4 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
Have yourself a merry Christmas
Contents What’s new?
04
Interview
08
A round-up of the latest news
Peter Watt, MD of our National Programmes, talks priorities
My diagnosis
Georgia Fielding’s ‘relief’ at her teenage diagnosis
Real life: Suzanne and Callum
One mum’s battle to transform her son’s school experience
Lauren-Rochelle’s story
Mask Off’s founder felt unseen
Home for Christmas
Sally Lawrence’s tips for having a calm, enjoyable festive day
43
20
11
“I will fight to make my boy happy”
Singer Sam Bailey on son Tommy
Making the connection
26
Money skills
32
Finding friends
34
Notebook
39
Readers to the rescue
42
I’m a... triathlete
43
How to connect, calm and communicate with your child
Teaching your child about cash
12
22
Helping teenagers to socialise
16
Things to read, do and see
20
Keeping a wanderer safe
Sam Holness talks sport
74% of parents told us their autistic child’s school place
“
does not fully meet their needs”
04
Winter 2021 3
What’s new?
Get in touch!
Our round-up of the latest news and views
Our survey shows broken SEND system Autistic children in England are being shut out of education because of a system that makes getting support feel like taking an exam on a subject you were never taught. We have the opportunity to change things, however, in the Government’s upcoming review on special educational needs and disabilities (SEND). Our new School report 2021 lifts the lid on the broken SEND system. We surveyed 3,470 parents and 605 autistic children. Around threequarters (74%) of parents said their autistic child’s school place does not fully meet their needs – and more than a quarter (26%) said they waited more than three years
Around three-quarters (74%) of parents said their child’s school place did not fully meet their needs.
to receive support for their child. Schools are struggling to provide adequate services and less than half of teachers feel confident enough to support autistic pupils. In addition, the pandemic has had a profound impact on autistic children’s learning and mental wellbeing. Without action, they will continue to fall behind, with some even excluded from school or forced into home-schooling. Tim Nicholls, Head of Policy at our charity, said of the Government’s planned SEND Review: “It is vital that autistic children and their families are at the heart of these changes. Our report’s powerful findings set out what we have
Over a quarter (26%) waited more than three years to receive support for their child.
Buy your Christmas cards now There’s still time to buy your Christmas cards, and we’ve got some competition-winning designs by autistic artists. There’s also a 10% Black Friday discount on all Christmas cards from 26-28 November. Visit www. charitycardshop.com/nas 4 Your Autism
been told needs to School change. Too many report parents have to fight 2021 for years; too many children have to wait for years just to get the support to which they are entitled. That is the problem the Government must solve to truly create an education, health and care system that works for autistic children and young people.” We have started a petition asking Secretary of State for Education Nadhim Zahawi to make education work for autistic children and their parents. You can support it by adding your name here: act.autism. org.uk/education-petition
Read the full report at: www. autism.org.uk/ schoolreport21
News
New inclusion award
Support us this Christmas
We are delighted to have been selected by Advent of Change as part of their 2021 charity network. You can support us this Christmas by buying their non-profit range at https://adventofchange.com/
Online branches We are very excited to launch our new Autism Inclusion Award for mainstream providers, and to reveal the first winners. The award recognises mainstream providers in education, general health, community activities and the criminal justice system that are working hard to support autistic people. Congratulations go to the first winners of the award: Arlesdene Nursery and Pre-school (pictured), Holy Trinity Primary School, and Rye Park Nursery School Centre, all in Hertfordshire. Christine FlintoftSmith, Head of Autism Accreditation at the
National Autistic Society, said: “We’ve laid out clear steps and requirements that providers must take and meet to achieve our Autism Inclusion Award. We want to help professionals give the best possible care to autistic children and adults, supporting their journey through education and beyond. We hope to have many schools and other mainstream settings apply for our award, and hope we can work together to give autistic people the best possible chance in life.” Find out more about the award and how to apply at www.autism.org.uk/autisminclusion-award
Are you looking to meet like-minded people, make friends, or try a new hobby or interest? Join one of our new online branches and get to know fellow autistic people from the comfort of your own home. Whether you’re into arts and crafts, reading or sport, we’re sure to have a branch that’s right for you. Or, you could even set up your very own online group. Find out more at www.autism.org.uk/onlinebranches
NHS COVID Pass exemptions
Some autistic people are unable to be vaccinated and/or tested for medical reasons. We’ve explained how to apply for an NHS COVID Pass medical exemption in England on our website, as well as what’s happening in other nations. Visit www.autism.org.uk/COVID-pass Winter 2021 5
Diary dates What to do and where to go
27 November 2021
Annual General Meeting
We hope to see you at our AGM for an update on our work and campaigns. You can register to attend at www.autism.org.uk/get-involved/ membership/agm
1 December 2021
Stars Shine concert
Join us for an evening of Christmas carols and festive cheer, featuring the EC4 Music Choir and celebrity guests. St Clement Danes Church, Strand, London WC2. Buy your tickets at www.autism.org.uk/shop
10 March 2022
Autism and mental health conference
Our mental health conference will focus on the crucial issues impacting the mental health of autistic people, and explore strategies for effective support. www.autism.org.uk/autism-and-mental-health-2022
28 March to 3 April 2022
World Autism Awareness Week
Put the dates in your diary and start thinking what you’d like to do to help create a world that works for autistic people. See how you can get involved at www.autism.org.uk/waaw
We’re going to mark this milestone with a whole range of activities. 2022 is ’s We’ll focus on our beneficiaries, our charity members and supporters 60th ry! so we can celebrate the anniversa extraordinary achievements of the past 60 years and look forward to another extraordinary 60 years. There will be lots of opportunities, from fundraising to supporting our campaigns. So, watch this space − we’re really looking forward to celebrating with you. 6 Your Autism
Support system in Wales The Welsh Government has started a phased rollout of a new system of support for children and young people with additional learning needs (ALN). Over the next three years, the new ALN framework will replace the separate special educational needs (SEN) and learning difficulties and/or disabilities (LDD) systems in Wales’ schools and colleges. Children and young people aged up to 25 who have ALN will receive individual development plans (IDPs) – setting out the support pupils and students will have a legal right to – while SEN/LDD plans and statements will be phased out. The reforms make some welcome changes and have the potential to transform the expectations and experiences of autistic young people and their families. However, we remain concerned about resources and implementation, particularly amid coronavirus recovery, a new curriculum and post-16 reforms. We are raising our concerns with the Welsh Government and working to ensure successful implementation through the Third Sector Additional Needs Alliance. For the background to the changes and a timeline for implementation, visit www.autism.org.uk/additional-learningneeds-system-in-wales
Challenge yourself and run one of the iconic World Marathon Majors, the TCS London Marathon. We have 175 charity places in the 2022 event – our biggest team ever! www.autism.org.uk/londonmarathon
Interview
“Together we’ll create a stronger understanding of what it’s like to be autistic” Peter Watt joined the National Autistic Society in July as Managing Director of our National Programmes. He tells us about his daughter Ruby, and his passion for meeting the needs of autistic people and families across the UK Hello Peter! As Managing Director of National Programmes, what’s your remit?
I oversee our vital work equipping autistic people and families with information and advice, campaigning for their rights, as well as our fundraising, training, consultancy and conferences.
What are your first priorities? And how will you ensure we are doing what autistic people and their families need most?
Our first priority is working with autistic people and their families to make sure that what we offer is what they actually need. And we are hearing about the critical issues they need support with. One issue is the trouble families have getting autistic children the very best education. So, we need to focus on providing support to navigate the education system. We know that autistic people 8 Your Autism
experience mental health issues, but accessing services is a real struggle. We also know there’s a long waiting list for diagnosis. After diagnosis, actually getting the support people need for their individual circumstances is very difficult, so that’s a priority for us, too.
We need to make sure we have services that meet all of these needs. And that will be a combination of advice via our website, supported by really fantastic peer support from the volunteers in our branches. And we know that many autistic people face barriers because of
Peter Watt: Fact file ● I started as a nurse, specialising in helping older people, which I found very rewarding. ● I then got into politics, joining the Labour Party and serving as the General Secretary from 2006-2007. ● I moved into the charity sector when I became the CEO of Counsel and Care, a charity for older people. I went on to work as a Director at the NSPCC, and then for the London Borough of Hammersmith and Fulham, running some of its children’s services. Interests: ●W atching football and cricket. I support the greatest football team in the world… Liverpool!
Interview
a lack of public understanding of autism. So, we also need to work very closely with our partners to create a stronger understanding of what it’s like to be autistic.
How can we hold the Government to the promises in the autism strategy?
We belong to the Care and Support Alliance, and together we’ve been calling on Rishi Sunak to bring forward Boris Johnson’s promised funding for social care. We are also going to make some really clear calls to action to our members and supporters, so that together, that strong, combined, unified voice is persistently calling on the Government for faster diagnosis, clearer post-diagnostic pathways and an investment in better, clearer, public understanding of autism.
Peter’s daughter Ruby was diagnosed aged seven
Can you tell us about your daughter Ruby?
Nearly all political parties supported the concept in their manifestos, with the SNP committing to introduce the commissioner as part of an Autism, Learning Disability and Neurodiversity Bill. This was all thanks to autistic people and families campaigning alongside us. Now we need to make sure we get a commissioner who truly makes a difference.
Ruby is a fantastic young woman. She is very verbal and has lots of interests. In the future, she would like to work with children. She attended a very supportive mainstream school until she was 10, and is now at a special school for autistic students, which she loves. I think Ruby’s early diagnosis and support from both schools has really helped her understand her autism. She knows she can sometimes feel overwhelmed, and is learning to recognise when she needs to take time out to make sure things don’t get too much for her.
And what are we working on in Wales and Northern Ireland?
What would you like to see Ruby do in her last years at school?
We were successful in Scotland with our campaign for a commissioner for autistic people – what’s the latest?
Wales now has its first legally binding code of practice on autism, following our Autism Bill campaign – it’s vital people know about it. A seven-year autism strategy is being developed for Northern Ireland. We sit on the forum that is informing the strategy.
I’d like to see her last years in education focused on three things. First, maximising her academic learning, so she reaches her full potential. Second, a real focus on life skills: travelling safely and being able to manage money. And third, I would like her to have work placements, to
experience the structure of going to work. And a plan for how we begin to reach out to potential employers. Because what we want for her in the long term is that she lives a happy and fulfilled life.
Does Ruby like Christmas?
She absolutely loves Christmas! We’re a very modern family in that Ruby gets one Christmas with mum and one Christmas with dad, because we’re divorced. And then we’ll have a joint new year. She thinks about what she wants, and the list gets longer as we get to Christmas. But she’s so grateful for everything that she gets. She loves giving things as well. The one thing she’s not so good at is secret Santa. I always help her with the presents, and she struggles every year to keep quiet about who she’s got and what she’s bought them.
Campaign with us at www.autism.org.uk/ campaign Winter 2021 9
My diagnosis
“It became difficult to suppress my autistic traits” Georgia Fielding was diagnosed as a teenager Before my autism diagnosis at 18, life felt like trying to read a book that was written in a language I didn’t speak. I was your average child. I had seemingly sailed through school, but the reality was that I struggled to understand the society I lived in. I couldn’t read social cues or facial expressions, and was often labelled as rude. I worked hard to fit in and did a good job. However, during A-levels, it became difficult to suppress my autistic traits and my mental health declined. I eventually spoke to a welfare officer at my sixth-form college about how isolated I felt and, after going to the doctors, I began taking antidepressants. Regardless, I still wrestled with everyday life. One day in class, my teacher called me
For more information on getting a diagnosis, visit www.autism.org.uk/ advice-and-guidance/topics/diagnosis Want to share your or your child’s diagnosis story? Email YourAutismMag@nas.org.uk
rude, although that was not my intention. It really upset me, so I spoke to the welfare officer. We eventually realised that I had been misunderstood and that I was, in fact, overstimulated by the noisy classroom. The welfare officer then suggested I might be autistic and, after some research, I agreed. At the time, I was with the Community Mental Health Team. I told them about my conversations with the welfare officer. I was concerned they would think I was being dramatic, but they took me seriously and referred me to the Leeds Autism Diagnostic Service. From there, I attended several diagnostic appointments. It was a lengthy process, but also surprisingly fun. The diagnostic centre was warm and nonjudgemental, and I even sat on the floor playing with fidget toys without being called immature. It was the first space I had ever felt accepted. I know it’s a cliché, but my diagnosis was a relief. Suddenly, the world was less confusing. I felt like I had finally found a book written in my language! Winter 2021 11
Real life
Suzanne and Callum’s story Suzanne writes about her son Callum, and how advice from our Education Rights Helpline transformed his school life Callum is autistic and has a learning disability. He was diagnosed at three, and is now 16. He has sensory differences, so he’s dealing with reactions to lights, sounds and textures all the time. He also has difficulty communicating and wasn’t able to speak until he was 10. We have to support him in every aspect of his life. If we’re out and about, one of us has to be with him, he can’t go out on his own. That sometimes involves explaining why he has a compulsion to touch people. We also have to reiterate what he is saying when people can’t understand him.
Callum’s school experience
We had a good experience at primary school but, unfortunately, when Callum went to secondary school his transition was not handled well. The staff just did not know how to cater to Callum’s needs as an autistic child. He sometimes had breakdowns and they would take him to what they called the green room, but it was essentially a cupboard. The staff said they could see him through some kind of mirror and a peephole, but he couldn’t see them and it escalated his anxiety, he was terrified. I would then be called and told how badly he had behaved. This went on for weeks, and then they started sending him home. The first time they sent him home for a cooling-off period. I agreed to take him home, because I didn’t know any better. But then there was another 12 Your Autism
incident as he tried to escape from the teacher on his way to the cupboard. After this he was formally excluded. I called the Education Rights Helpline to appeal against the exclusion. It was coming up to Christmas as I was working on Callum’s appeal, and around that time my mother died. Callum kept apologising to his grandfather for killing granny. He thought it was his fault she had died. It was horrendous. However, after Christmas, things began to change with the appeal. I got a letter from
Real life
Five tips on getting the education your child needs 1 Communicate with the school. Raise concerns as early as possible, and use recent and relevant examples that reinforce your views. 2F ind out who’s responsible for SEN/ASN/ALN at the school and know your education rights and policies. Our website has information for each nation www.autism.org.uk/education
the council saying that the school was dropping the exclusion and wiping it from Callum’s records. They invited me to a meeting with the head of the school and the education officer, and they apologised. I then worked with the team on the Education Rights Helpline to get help setting up a co-ordinated support plan for Callum. Now, it’s like night and day. The school is so much better with Callum. The department of additional support is very good with him. This is all because they made the effort to
3 Share autism knowledge and resources with staff so that they have a better understanding of autism and how it impacts your child. The resources on our website may help with that. 4 Prepare in advance for meetings. Write a list of key points to discuss during the meeting. Include things that have been going well for your child, in addition to any problems. Keep accurate records of meetings and any deadlines. 5 If you can’t resolve your concerns with the school or local/education authority, there may be further action you can take.
Winter 2021 13
Real life
questions, to not just accept what they are told, as it might not always be the truth. Often, people don’t know what is law. I hate to think where we’d be if I hadn’t called the Education Rights Helpline. Up to that point, everybody was shutting the door on us, no-one was listening or helping. There was almost an atmosphere of blaming me – it was my fault, I was a bad parent. I hate to think what would have happened to Callum.
What needs to change in education?
Up to that point, everybody was shutting the door on us, no-one was listening or helping
get to know him. They’ve taken on what’s been put in place for the co-ordinated support plan – he’s really happy now.
Knowing your rights
When your child gets diagnosed, no-one tells you what your rights are. You just believe everything the council or the school tells you. You don’t question it at all, and you find yourself going with what they say. It’s why I am now volunteering on the Education Rights Helpline. I advise other parents to ask 14 Your Autism
Autism awareness training for teachers would make a huge difference. At the moment there is a lot of emphasis on when things go wrong – outbursts or meltdowns, for example – it’s important that things don’t get to this stage. Autism awareness training would help teachers create a better teaching environment, avoiding sensory over-stimulation and understanding the importance of keeping calm. In the past, if Callum got upset, the teachers would get upset too, and it became a vicious circle. Thankfully, things are much better for Callum, and the staff are much better at supporting him and involving me in discussions. It now feels like they are working with me, not against me.
The future
Callum’s coming up to the age where he’s going to be leaving school. My hopes for Callum’s future would be that when he leaves school, there are opportunities for him to at least do some voluntary work in something that he loves, such as transport. Callum would love to be a bus driver. That may not be possible, but some sort of voluntary work in that area would be wonderful.
To support the work of our Education Rights Helpline, please donate at: www.autism.org.uk/appeal
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
Real life
“I was the only person of colour in the room” Lauren-Rochelle Fernandez, founder of Mask Off, reflects on feeling unseen, under-represented and misunderstood after her autism and ADHD diagnoses 16 Your Autism
Real life
Fast approaching 30, it is three years since I was diagnosed with autism and ADHD. From the age of four, I was continually misdiagnosed. Eventually, it took two of my younger siblings to be diagnosed as autistic for me to even consider this might be the answer to my lifelong queries. My brother was the first to be diagnosed, aged four, then my sister, aged 16. It was her diagnosis that triggered me into action. I contacted my GP and asked for an assessment for autism. I remember feeling interrogated as to why I felt the need for a diagnosis so late in life, and what difference it would make for me. My diagnostic procedure was what I now know to be standard. At the time, it was like a three-stage job interview. I had to complete multiple lengthy questionnaires and go through a pre-assessment with my GP. After some time on the waiting list, I had my first session with the consulting psychologist within the same year. My mother came along to all three sessions. She provided insight I would People from ethnic not have been able to give, dating back minorities are four to my childhood and early years. times more likely than At the end of my third session, the white people to be consultant suggested there were detained under the several indicators I also had ADHD. My Mental Health Act perception of ADHD was “the naughty and disruptive boy in class” – there was no way I had this condition. I was reassured that the choice was mine as to whether or not I wanted to go through with further assessment for ADHD. I decided to go ahead, and was diagnosed with ADHD, too.
Post-diagnostic support
I remember being overwhelmed with feelings of confusion, resentment, grief, anger and pain. I was 26, with an autism and ADHD diagnosis. I had a follow-up session a month later with the same consultant. He checked how I had managed since my diagnosis, and referred me to the NHS ‘Asperger’s course’. Eager to attend, I was intrigued to meet others like myself. I assumed I would be able to relate to them, gain a better understanding and acceptance of myself, being around people who would finally understand me for who I am.
I was wrong! This was my first autistic anti-climax. Attending the Asperger’s course could not have been more intimidating as a young, black female. I was the only person of colour in the room. To my knowledge, I was the only person identifying as a woman, too. I felt more displaced than ever. Nothing that was discussed resonated. I persevered with the group, as I had built up such excitement and an expectation that I would finally feel ‘at home’. I could relate to some of the challenges discussed, such as isolation and sensory differences, but I never felt a sense of belonging.
The invisible black female’s perspective After attending the course, I still felt a real sense of being unseen, under-represented and misunderstood. So, I went back to my GP and asked for therapy, as my needs had not been met by the course. I began to consider that I might have been misdiagnosed. I was referred back to the Adult Asperger’s and ADHD team, who were unable to provide talking therapy, due to budget and resources not being there for adults. The consultant pointed me in the direction of some of the recommended resources detailed in my diagnosis pack. I found a 25% discount for the Headspace app and a reading list. But again, I found the reading list wasn’t very inclusive or appropriate. As with the course, I felt the resources lacked a diverse perspective and included no consideration for ethnicity, age, gender, culture or other socioeconomic factors. This is when I felt compelled to find somebody else who looked like me and who was autistic. So I went in search: @black autism, autistic woman, black autistic woman/girl/female, black female/girl/woman with autism. I even looked for culture-based disability groups, but to no avail. My hunt to find some kinship and representation, to see myself in somebody else, to seek guidance for my own journey, was exhaustive and exhausting. In complete disbelief, I asked my mum for advice. Mum reminded me that my sister’s autism journey had been completely opposite to my brother’s. She had no expectation
Winter 2021 17
Real life
when they were diagnosed, and she encouraged me to let go – to consider I might not find the support, allowances or guidance I thought l would. I thought I’d give it one last try, and it was then that I discovered Venessa Bobb on the National Autistic Society website, founder of A2ndVoice. I bookmarked her page.
People from ethnic minority backgrounds are likely to engage with services much later in their mental health journey
Traumatic experiences
Since 2019, I have experienced the threat of homelessness, domestic violence, hit and run, rape, harassment and a discrimination grievance, all in short succession. While going through these experiences, I approached different services and asked for help. I felt that, with my diagnoses, I was in a better position to receive specific support. Again, I was wrong. I thought that by being transparent with my support network, I had the safety to fight for what I believed I was entitled to from the services I approached. Unfortunately, I was repeatedly told I was very articulate and deemed too “high functioning” to receive help. A deeply traumatic series of events led to me being sectioned, in the middle of the pandemic, amid the Black Lives Matter movement in 2020. I was sectioned three times in three days during July 2020. Once you have been sectioned under the Mental Health Act, no matter what you know about your own mental health or underlying conditions, you are rendered voiceless because you are deemed mentally incapacitated. I fought tirelessly for my release, and felt near death many times. Despite the pleas and threats of my family members, I managed to discharge myself. I had nearly given up, but I thought of my sister. I thought that if she was in the same position, she might not be equipped to advocate for herself. The hardest part of being sectioned was getting myself to the point of discharge, against the opinion of medical professionals and my support network. But I did it.
Lauren-Rochelle at the bust of Nelson Mandela in London
I revived the concept after meeting Venessa and volunteering for A2ndVoice. I saw how much the community needs women like me: women who stand in the face of adversity, break down stigmas and challenge people’s perspectives, attitudes and understanding, while empowering younger generations to believe in themselves without limitation. Mask Off aims to raise awareness around neurodiversity and mental health, particularly within minority communities. We strive to empower, educate, and de-stigmatise, highlighting racial and gender inequalities faced by those in need of accessing services, their families and carers. I founded Mask Off using my lived experience. I continue to share my journey and campaign for legislative change, equality, diversity, inclusion and improvements to the services available for those who may be ‘invisible’ and vulnerable.
Why I founded Mask Off
Mask Off was conceived during the early stages of my diagnostic process and quickly put to rest because of personal circumstances. 18 Your Autism
To find out more information, go to https://maskoffcic.com
Real life
Coming home for Christmas Sally Lawrence’s son Simon visits for three days every Christmas. She gives her advice for making it work The biggest thing for Christmas is preparing Simon, but not too soon.
Coming home from supported living could be confusing for him if he saw his bags being packed too early. So, I ask Simon’s carers not to tell him or pack his bags until the day. The staff give him a Picture Exchange Communication System (PECS) schedule of what’s going to happen – getting in the car, seeing mum and dad, going into our house, and ending in a snack.
Simon is non-verbal, and using PECS is so important to him. It’s his
means of communication. He always has a PECS schedule, showing what he’s going to do. He puts it under his arm, but will occasionally get it out and have a little look. He can’t say, “Where are we going”, but, if he’s given a schedule, it shows him what’s happening and helps him make sense of this complex world.
Over Christmas, he has a PECS schedule for half a day at a time.
Not the whole day, as that would be overwhelming. His schedule always ends with something he feels comfortable with, such as a snack.
We prepare the house and lock away breakable things. Simon is 29, 6ft 5,
Simon with his family for Christmas 20 Your Autism
and loves jumping. When he gets anxious or excited, he will jump towards you, which can be quite daunting. He doesn’t do it intentionally; he’s the gentlest giant. So, the house is quite bare when he comes home. We do have a tree, but we keep it in a locked room at night in case he knocks it down. We turn the water off and clear the bathroom completely because, otherwise,
Real life
We keep presents simple. Presents are
quite difficult for Simon. He doesn’t really appreciate them, especially if it’s something soft, like a jumper. My mother gave him a jumper recently and he just gave the present back to me, unopened. If it’s something like a toy, he’ll rip it open. One toy and that’s fine. He doesn’t want more than that. Again, it’s sensory overload. I sometimes think about my other children, and what I spend on them I should spend on Simon – but, actually, he doesn’t need or want it. You’ve got to do what’s right for the autistic person. If they want a squeezy toy that costs £2.99, you’re going to make their Christmas a lot happier than buying something that’s inappropriate. We have to encourage him to open his presents, and we’ll open some on Christmas Day and some on Boxing Day.
Simon would pour shampoo down the sink, or drink it (he has pica). We have to make the house very Simon-safe. Simon is also epileptic and that’s the hardest thing, because you never know when he might have a seizure. Where he lives, he has night staff, but at home I can’t go to sleep until he’s asleep, which is sometimes 2am – and I’m up early to get ready for the day and to give him his medication.
We try to keep things calm for Simon. He’ll come home on Christmas Eve and we just let him settle. He loves his
routine and, if it’s all change, it can be really stressful. But he’s 29 and Christmas comes around every year, so he has sort of got used to it by now. He’s pleased to come home, and we just keep things calm, because if Simon got overstressed and his behaviour was really difficult, no-one would enjoy Christmas. You have to plan it round him.
We take Simon to church on Christmas Eve afternoon, and take sensory toys for him. We sit near the
door so we can go out if he gets noisy. We don’t make him stand up for the carols – he sits down and does whatever he wants to do.
The first year Simon came home, we gave him a full Christmas dinner and he picked up his plate and put it in the bin! It was sensory overload – literally
too much on his plate. Now, we put the food out in bowls, and give him an empty plate and let him put what he wants on it. He usually just wants the turkey! When he put everything in the bin, I did think – what’s the point, we might as well have sausage and chips! But we let him choose what he has now, and that works.
At Christmas, it is important to try to keep things the same as any other day. People think, it’s Christmas, I’ll have
an extra pudding or something, but it just doesn’t work with Simon. He loves his routine, and things that are different stress him out. It’s sometimes hard to accept that what one would like to happen can’t, but there is no point if it’s going to end up in tears. Simon’s got to enjoy it, and then everybody else does.
Read more Christmas advice at www.autism.org.uk/christmas
Winter 2021 21
Interview
Joseph Sinclair
Singer Sam Bailey chats to us about her son Tommy, her fight for his education, and the Tommy McCoo project to raise autism awareness
“I will fight to make my boy happy” 22 Your Autism
Interview
Can you tell us about Tommy?
He’s 12 years old, massively creative and is really into animation and art. He was diagnosed as autistic in June last year, so he went all the way through primary school and no-one picked up on it, not even me – I will carry that guilt for a long time. When Tommy was diagnosed, it was almost like someone took our blinkers off. I started to make connections and understand so many of his behaviours from the past – things Tommy has said or done, like hand dryers in the toilets being too loud, and holding his ears, or him not being able to listen to music like ‘Let it go’ from Frozen. Tommy also moves from side to side when he’s talking to you, and sometimes he walks around in circles. He can’t have food touching other food, but it wasn’t until we got his diagnosis that we understood.
How is your collaboration with artist Steven Brown related to Tommy’s diagnosis?
Tommy is a regular kid, he’s also very intellectual and intelligent. I want him to thrive in a school where he’s accepted offering what he needs. I’ve actually taken him out of school now because he was really struggling, to the point where it was dangerous for him to go. He got into a fight when a student took the mickey out of him because he has a chewbuddy, a chewing lanyard, and Tommy just lashed out. I don’t want him to be in that situation. I don’t want him to be in a mainstream school – he needs special provision where he can be around other children like him. So, I’m fighting for my boy at the moment. Tommy’s missed out on so much education because he’s not in the right place. To get to his secondary school, he had to go on the school bus, which was loud; there were people screaming and swearing. He
only lasted a couple of months making that journey. I had to start taking him, which I couldn’t do all of the time. And now he’s being home-schooled until we can find a solution. I feel, from a mother’s point of view, that it’s the safest place for him because mainstream school is not for him.
What are you doing about the EHCP to get it to where Tommy needs it to be? Tommy’s therapist has rewritten his EHCP and we’ve sent it back. I asked Tommy to write in it, too. I got a massive 1,000 words about his autism, through his eyes. He says how much he struggles at school and how he’s scared there. He says that even one of the
Since Tommy’s diagnosis, I’ve been trying to encourage him to celebrate it, because it means he’s going to get the help he needs now – and in the future. Autistic people display so many different colours, in their creativity and the way they are. I thought it was a good idea to ask Steven Brown to paint his picture of autism. It helps one to understand it, from the fidget spinner to the colours, to the black and white background and how autistic people stand out. Tommy thinks it’s really cool.
Did Tommy get more support at school after his diagnosis?
Tommy’s education, health and care plan (EHCP) came back, but it’s not
Sam with Tommy, who is currently being home-schooled Winter 2021 23
Interview
Tommy McCoo is the latest addition to Scottish artist Steven Brown’s collection of famous colourful McCoos. It was designed with Sam Bailey and our charity, and produced in honour of her 12-year-old son Tommy. Etched with iconic, colourful strokes in our spectrum colours against a soft grey background, Tommy McCoo has been designed to reflect the autism spectrum and to celebrate Tommy and the 700,000 people in the UK who are autistic. Five per cent of the proceeds from the Tommy McCoo series go to our charity, to help the vital work in creating a society that works for autistic people. For more information on Tommy McCoo, please visit www.stevenbrownart.co.uk/ pages/tommy
teachers made fun of his chewbuddy. My heart was broken, but I was so incredibly proud of what he wrote.
Is therapy helping with Tommy’s self-esteem?
Yes, but whenever he’s been going to school and comes back, it’s hard to pick him up. His mood is so different when he’s there. He knows eventually he’s got to go to a school. He’s not going to like it unless it’s somewhere that understands him. They need to allow him to go off and have a bit of a meltdown, and not see it as a behavioural thing. A lot of the time in school, Tommy’s behaviour is ‘bad’ and it’s because he’s struggling with the noise. People see him as a target because he’s so different. He wore ear defenders at school and the children were tapping on his head 24 Your Autism
saying, “What are you listening to?” – it breaks your heart. Then I took him to visit a special school, and there were kids with ear defenders – and no-one batted an eyelid. Tommy is a regular kid, he’s also very intellectual and intelligent, and yet, if he wants to wear his ear defenders, he becomes a target. I want him to thrive in a school where he’s accepted.
Did the school teach the children about autism?
They sat them all down and explained about autism, but it was just one day. Kids aren’t going to take that seriously and it’s like, we’ve ticked that off the list, it’s done. As a school, we’ve covered autism, in one lesson, in one hour. That’s not enough. Because it’s all about acceptance in mainstream schools and Tommy was not accepted. The school has tried. But
it’s just not right for my son and I will fight to make my boy happy.
Away from school, how’s family life? Are Tommy’s sisters supportive?
Since his diagnosis, they cut him a little bit of slack, as have we. But his sisters probably think he gets preferential treatment. His younger sister, who’s just turned seven, said one day in the car, “Mummy, I want autism,” and I said, “Why?” and she said, “Because you don’t ever get told off!”
You’re touring in Beauty and the Beast until June next year. How is it going?
I’m very excited about being in the show. I play Mrs Potts, a motherly character, so there’s a bit of me in there, which is lovely. I love it, it’s a great cast, a great bunch of people and I can’t wait for people to see it.
Communication
Making the connection Tessa Morton and Jane Gurnett, founders of Act for Autism, set out some practical ways you can connect, calm and communicate with your autistic child By the time my son was four years old, there was a worn patch on the naughty step in our house. He would often be sent there during mealtimes to reflect on how he might ‘behave better’. And it didn’t make a jot of difference. He squirmed at the sound of us chewing, was incensed by the inane conversation about the day’s activities, and demoralised by the fact that at any point he would be punished and sent to the step. I was wrongly seeing his autism as a behaviour problem
and trying to punish the behaviour out of him for his own good in a typical parenting style. If only I knew then what I know now.
Supporting parents
My son is now 22 and, six years ago, I co-founded a not-forprofit social enterprise with Jane Gurnett called Act for Autism. Our mission is to support parents in understanding their children, teachers and professionals to understand the children they work with, and autistic individuals in understanding themselves.
Autism is too often seen as a behaviour challenge, with intense behaviour programmes put in place to support the child. This suggests that if the child behaves better, they will be better able to connect. At Act for Autism, we see it the other way round. We see autism as a connection challenge, the challenge being society’s ability to connect with autism in general. And the challenge is also parents and teachers lacking understanding in how to connect with the child they live and work with, and the child’s connection with self and their environment. We believe, and have seen in our work, that if we focus on building these connections, what invariably happens is that the so-called ‘behaviours’ reduce. The child feels connected, calm and then is more able to communicate.
The 3 C pathway
Tessa and Jane, founders of Act for Autism 26 Your Autism
From this principle, we have created the 3 C pathway. It’s a simple, relational approach anyone can use, and puts you and your child’s connection at the centre. We work on ourselves and how the parents’, carers’, and professionals’ relationship with the child impacts on their ability to connect, calm and communicate. These three steps, Connect, Calm and Communicate, form the basis of the 3 C pathway.
Communication
Find out more
iStock.com/ monkeybusinessimages
● www.actforautism.co.uk ● info@actforautism.co.uk ● FB @actforautismnow ● Instagram @actforautism_ ● Twitter @actforautism1
1. Connection
Our work supports parents, carers, and families to understand autism from the child’s perspective. First, by using films made by our young advocates. Second, by engaging participants in exercises, where they experience sensory chaos and then attempt simple tasks. This is the first step in the 3 C pathway, an empathetic connection, understanding how the child feels and the sensory battles they face just getting through the day. Connection also means physically being alongside the child, in their rhythm, with no expectation, just being present.
Connection exercises to try with your child: ● sharing time doing something your child is passionate about ● walking with no talking ● moving in rhythm with them if the child is stimming ● noticing good things and validating with no expectation of a response.
2. Calm Anxiety is prevalent among autistic children. With this knowledge, many well-meaning parents and practitioners put a lot of effort into reducing the child’s anxiety without first thinking about the
anxiety they themselves may be projecting. In the 3 C pathway, the Calm step starts with you calming yourself. Bringing your anxiety into a situation with an autistic child will only escalate the situation. Once you have regulated your anxiety, the connection will be more effective, and you can then model calming techniques for the child. This will enable them to ultimately self-regulate, which should be the goal. Calming exercises for you: ●d eep breathing/candle breathing: blowing into the palm of your hand, moving Winter 2021 27
Communication
Calming exercises for your child: ●m odel the above exercises and have fun doing them with your child and all the family ●p rovide a safe, calm place at home for your child where they can retreat to whenever they like. It could be a pop-up tent, a corner of a room, or their own room. Encourage them to go there when things become overwhelming for them.
3. Communication
Autism is often seen as a communication problem or deficit, and therefore interventions start with attempting to get the child to talk. In parenting, there is also pressure to get the child to talk, tell us what they need and then listen to us more effectively. At Act for Autism, we appreciate this, but believe that starting at this step is counterproductive. If a child is anxious, overwhelmed or confused, asking them to talk in a way that you want will no doubt only increase the pressure. The third step in the 3 C pathway is concerned with encouraging any form of communication and validating it – creating a secure base for the child to feel heard. Communication, we believe, is not merely words. Gestures, movement, signs, emojis and drawing are just as valid, and often easier for the child to communicate, 28 Your Autism
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your hand away until you can’t feel your breath any more and repeating ●h eartbeat work: tapping your hand lightly on your chest in time with your heartbeat and then slowing the tapping down, which will bring your heartbeat down.
whatever their age. We notice, too, that if steps one and two of the 3 C pathway are followed, then communication – step three – often happens instinctively. Once a communication is established, do not force or pressure for more – let the child lead. Communication exercises to try: ●m odulate your tone so your communication style is low and slow ● t alk in parcels – simple instructions repeated calmly ●w rite things down in a list, or create picture plans to outline instructions or timetables ● play with sound and movement ● r epeat your child’s sounds softly as a response
Giveaway
●d o not continuously correct or expect speech in social situations. All the above exercises and many more are explored in our book, which has been written to help explain why connection is such a challenge for us and the wonderful children we encounter. The 3 C pathway can be used alongside any other support that you are finding helpful for your child. Two of the biggest benefits to the families we have worked with over the years are that it costs nothing, and you can start building better connections at home today.
We have two copies of Tessa and Jane’s book, Connecting and communicating with your autistic child: a toolkit of activities to encourage emotional regulation and social development to give away to members. For your chance to win, email your details to YourAutismMag@nas.org.uk by 20 January, quoting ‘Act for Autism’. The winners will be announced in the next issue. Find out more and buy the book at: bit.ly/ActforAutism
Helen Eaton MSc, BA, PGCE www.heleneaton.co.uk info@heleneaton.co.uk
• Autism training and public speaking • School twilight talks and training sessions • Workplace and charity autism awareness training Arna & Ruby Autism Graphic Novels Super resources for families and schools. Autism explained with helpful strategies and beautifully illustrated stories. Autistic Adults Mentoring Services: This understanding and supportive service aims to explore what it means to be autistic, and offers practical strategies for everyday life and work. Family Mentoring Services: This friendly and supportive service aims to increase parenting confidence for families with autistic children or young adults.
Stars Shine carol concert Ring in the festive season with an evening of Christmas carols and celebrity guest speakers. St Clement Danes Church, London WC2 Wednesday 1 December, 7.30pm Find out more and book your ticket here www.autism.org.uk/stars-shine The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
iStock .com / PeopleImages
Advice
How to… teach basic money skills Will your child have Christmas cash to spend? Experts from the National Autistic Society’s Helen Allison School explain how to teach your autistic child about money Money skills are one of the basic functional concepts that autistic people will use during their lives. To support learning in this area, it is essential that autistic young people have a deep understanding of addition and subtraction, as well as counting in different steps, and matching and sorting skills, generalised to different items. 32 Your Autism
At Helen Allison School, we encourage the development of these skills through a wide range of activities. Opposite, our teachers explain the learning behind a wholeclass shopping trip. This is something you can also do with your child. During these trips, students take their pocket money to purchase an item of their choice. Although this
may sound like a meaningless task, the skills developed while shopping can be a huge gain. The students are able to deepen their understanding of money and budgeting, and they also develop resilience and confidence when dealing with shop noises, queues and, potentially, large groups of people.
Advice
Tips to remember: ●S tart early and practise regularly, familiarise your child with real coins. Do not use toy money as it presents another layer of abstraction. ● Practise coin identification on a regular basis. ●S ocial stories and visual supports are particularly useful to assist learning. ●T ry to take your child with you to the shops on a regular basis. You may have to adjust the time you go to ensure the environment is less busy and, therefore, not so overwhelming. This will enable them to see and make purchases, and embed important life skills. ●B uild confidence through role play or games – play ‘at the shop’ or ‘at the café’. ●E ncourage your children to save – this will enable them to develop good financial literacy, such as adding, subtracting, grouping, and multiplying money. Saving towards desired items will teach them to look for the best deals and discounts.
Money skills in practice
Students enter a shop with their £2, knowing they will need to budget and make decisions about what to buy. Discussions take place about offers and items on sale, and the students also look at the difference between the brand-name items and the store-brand items. Students can often be heard saying, “If I get this now, I will buy that next time”. A lesson learnt here – they can only buy what they can afford, and will need to wait for the other items. This is another great life skill. Students also try to make the most of their pocket money by spending as close to £2 as they can. We use
picture pointing boards and visual cues to support students during a local shop visit and to actively participate in deciding what to buy before the visit. The boards remind students what they are looking for in a shop, and the shopping routine (choose, pay and take away). Opposite are some of our ideas and visual supports, which have proved successful in developing students’ understanding of money. These activities reinforce the idea that in real life we use coins of different sizes, shapes and colours to buy items; we exchange a coin for goods (class shop) and correctly sequence the buying of goods (choose, pay and take it away).
There is more money advice for autistic adults on our website at www.autism.org.uk/managingmoney You can also use our free money management online training to improve your skills. Go to www.autism.org.uk/moneymanagementmodule
Completing a coin pattern by requesting a coin from a partner
Exploring coins — matching real coins to a picture or coin bingo
Choosing an item from a menu, counting and paying for items Winter 2021 33
Advice
Finding friends If your teenager wants to make friends, yet struggles with social interaction, how can you help? Lorraine MacAlister, one of the authors of our Teen Life programme, gives her advice All people, autistic or not, will vary in how much time they want to spend with other people. Some will want lots of friends, others will be happy with a few. We must be careful not to project what we think of as ‘proper’ or successful social interaction onto autistic people. Not all autistic teenagers will seek friends. This could be a sign of loneliness or a desire for solitude. Others may wish for friendships, but struggle with how to make friends. It is important to work out whether your teenager wants to make friends or not, and if they need any support.
Teenagers at one of our youth clubs 34 Your Autism
Explaining what friendship is
Many autistic teenagers struggle to assess true friendship. This can sometimes leave them open to peers exploiting them. To help them to understand what a true friend is, Robyn Steward’s book The independent woman’s handbook for super safe living on the autistic spectrum has a useful chapter on this. You might need to point out to your teenager the potential benefits of spending time with other people. These include finding other people who have similar interests. Being with friends can help avoid problems such
as teasing and bullying. And building social skills now may help them to get a job and live an independent life in the future.
Groups in your local area
Get in touch with your nearest National Autistic branch and find out about the clubs and activities they offer. Branch members will know the challenges of finding friends and can usually recommend other autismfriendly clubs in your area. Other organisations such as arts, drama or gaming clubs may have specific sessions that are accessible too. Teenager Soffi Edwards found help from the Blaenau Gwent Branch, which became a true lifeline. “I find it very difficult to make friends, and find social situations hard,” she explains. “But now I’ve made lifelong friends that I would not have without the support of the branch. I really enjoy socialising with people who have the same needs as me.” You can also search our charity’s Autism Services Directory for local activities and clubs. Your local council’s website will also feature activities for autistic people in your area. Encourage your teenager to join after-school or local youth groups related to their interests. Structured activity groups often work well for
Advice
iStock.com/ Vimvertigo
Questions to prepare ● How do I start a conversation? hat should I say during ●W a conversation?
autistic teenagers – for example, Girl Guides or Scouts and martial arts. Talk to the activity leader beforehand about your child. Our charity has information for sports and activity leaders at www.autism.org.uk/sport.
Managing anxiety
Introduce your teenager to the idea of new activities gradually. Some people might need lots of pictures of where they will be going, or have shorter visits to start with. Many autistic teenagers need support and reassurance when doing social activities, as spending time with other people can make them anxious. They may have had previous negative experiences. Telling your teenager how long any social activity is going to take, and planning in time on their own afterwards, can help. Understanding the social rules and practising things to say are also important.
Inviting other teenagers over In a similar way to arranging play dates when children were younger, it is important to help by arranging
friends to come over. It can be useful to remind autistic teenagers of the need to plan what they are going to do, and they may also benefit from a detailed structure, such as how long the other person will be there, the need to stay with them, and to be friendly. Some autistic teenagers may have little or no verbal communication with friends who come over, but this does not mean they are not interacting.
Practising social skills
There are lots of unwritten social rules around spending time with other people and friendships. Some autistic people may have limited understanding of these rules, and can unwittingly break them. Others will analyse these social rules in detail and find it hard to cope with any changes. Before meeting new people, help your teenager prepare. Write down a list of things they can ask or roleplay scenarios with them. Many autistic teenagers may need someone familiar with them when meeting someone new.
●W hat kinds of things are we both interested in? What topics should I talk about? ● How can I end a conversation? A useful book is The asperkid’s (secret) book of social rules: the handbook of not-so-obvious social guidelines for tweens and teens with Asperger syndrome (2012) by Jennifer Cook O’Toole.
Online options
There has been a big growth in online communities in recent years. Many autistic people find it easier to communicate online, typing instead of talking and not having to worry about eye contact and interpreting body language. The National Autistic Society has its own online community, which teenagers over 16 can join at www.autism.org.uk/community You could also join one of our new online branches with your teenager. They meet regularly via Facebook, and are free. We have an online book club, LGBTQ+, arts and crafts and a running branch. All autistic Winter 2021 35
Advice
Max’s story I’m an introverted person until I start talking to someone. At 13 years old, I had one friend at school. He was, and still is, a great friend, but having a tiny social circle tended to worry my parents – and me. Was I inept socially? Would people ever accept me? I was closer to my teaching assistants than my peers. And all my friends online, in my evergrowing guild, didn’t seem to matter outside of the pixelated screen – according to adults who weren’t passionate about the virtual world. In a massive mainstream school where most students
people are welcome, but under 16s must attend with an adult. Our charity also runs free online social groups in Scotland for those aged 12-26. Facilitated by staff, they offer a place for young people to connect and talk about whatever they wish − from film and TV, to cooking, gaming, art, Lego and other interests. They’re a great way to build confidence and communication skills and make friends. If your teenager enjoys chatting while gaming, they can do this via Spectrum Gaming – www. spectrumgaming.net. It’s an online community for autistic teenagers who enjoy gaming, which aims to create strong friendships. Before using any online communities, it is vital to teach your teenager about online safety. Mencap offers a useful guide for parents: Learning disabilities, autism
won’t give their ‘autistic peers’ the time of day, making genuine friends is easier said than done. Most young people in the Autism Spectrum Disorder (ASD) unit had horrible experiences with mainstream pupils, so I didn’t want to risk being next on the chopping block. It’s odd to me that people who have barely lived a decade are pressured to make friends quickly in an unkind education system. It took me years to forge meaningful friendships with people, and I’m still learning today. Relationships matter
and internet safety – see bit.ly/ mencap-online-safety. The UK Safer Internet Centre, www. saferinternet.org.uk, also has advice to help young people stay safe. ●S ome of this information is taken from our Teen Life course,
a great deal, but patience with yourself and others can really pay off, too. Max has written two books: Why is he still here? and The messed up life of Johnny Moore. Sign up for his newsletter at www. maxtoperauthor.com
which supports parents and carers of young autistic people aged 10 to 16. Find out more at www.autism.org.uk/teenlife ●W e have more guidance on making friends at www.autism. org.uk/friends
Handy links National Autistic Society branches – www.autism.org.uk/branches Online branches – www.autism.org.uk/onlinebranches Scotland online social groups – ScotlandSocialGroups@nas.org.uk NASplus+ Glasgow – free online 15-week social skills programme for teenagers in Glasgow – www.autism.org.uk/nasplus-glasgow Autism Services Directory – www.autism.org.uk/directory
Winter 2021 37
Notebook
Everything you need to read, do or see
Approaching autistic adulthood: The road less travelled AUTHOR: Grace Liu PUBLISHER: Panoma Press PRICE: £12.99 VERDICT: An honest, funny, and refreshing take on the autistic experience
As the title implies, Grace Liu’s book takes us on a journey from her early years in Taiwan and her diagnosis as a child, to life as an autistic adult. The author expertly balances personal anecdotes with handy tips, tools, and phrases for surviving the strange world of neurotypicals. Topics include sensory differences, work, and relationships. Liu shares her experiences of ‘coming out’, both as an autistic person and as a member of the LGBTQIA+ community. Readers are also treated to some fantastic chapter illustrations, drawn by Liu herself, and reflections from fellow autistic adults. Hermione Cameron, Copywriter at the National Autistic Society
Giveaway
We have a copy of Approaching autistic adulthood to give away to members. For your chance to win, email your details to YourAutismMag@nas.org.uk by 20 January, quoting ‘Adulthood’. The winner will be announced in the next issue. The winners of last issue’s competition are Suzanne Murphy and Daniel Bird. They each get a copy of The autism-friendly guide to selfemployment by Robyn Steward. The winner of Spectra Sensory Clothing’s school trousers and shirt is Anish Rohit. Congratulations!
Stephen from the inside out
AUTHOR: Susie Stead PUBLISHER: Impress Books PRICE: £9.99 VERDICT: Moving portrayal of the mental health system and its flaws This was one of the hardest books I’ve ever had to read, because it was ‘triggering’ for me on so many levels. The book is about the life of an autistic man with a mental illness, who spent much of his adolescence and adulthood in psychiatric units, both voluntarily, and sectioned under the Mental Health Act. Stephen slipped through every net there was, and never really received the help, love and support he needed and deserved. The author, Susie Stead, is honest and forthright in her condemnation of the system that failed Stephen. She is equally open about her own struggles to help and even cope with his mental illness, and the constant demands on her time and emotions. Stephen mentions in the book that ‘his life is a waste of time’. I cried when I read that, and not for the first time during my reading of his suffering. If anything, his life was precious, because he gave a voice to others and I hope professionals who read it take note. Everyone should read this book because of its honest portrayal of the mental health system, its flaws, and the detrimental impact such flaws can have on a person’s life and mental health. Overall, I loved this book for its integrity, and I can definitely recommend it to others. Just don’t forget your hanky. Pat Higgins, Your Autism magazine reader
Winter 2021 39
Notebook
The ESSENCE of autism and other neurodevelopmental conditions AUTHOR: Christopher Gillberg PUBLISHER: Jessica Kingsley Publishers PRICE: £18.99 VERDICT: Interesting approach to co-occurring conditions
This book details the different neurological conditions classed as ESSENCE, which includes autism, ADHD and lesser-known conditions, such as selective mutism. The author focuses on how all the conditions
overlap, and why individual diagnoses, particularly in childhood, may not be useful because of these overlaps. He advocates for ESSENCE centres, which could be used to ensure that professionals discuss an individual with each other and better meet that person’s needs. I liked the short chapters, but, as a result, there were limits on the detail the book went into. It also uses a lot of acronyms, which may be confusing to a person unfamiliar with such terminology. An interesting and well-researched book. Katie Hobson, Your Autism magazine reader
Our six favourite… stocking fillers, and one stocking to fill!
1
Cotton Candy Colour Mix
Make this festive season sweet with a Cotton Candy Colour Mix that you can stretch and mould. Kids of all ages can get creative with their own colours, bit.ly/OoshCotton-Candy
2
Funky Christmas ducks
These bath-time buddies make a ‘quacking’ Christmas gift for autistic kids. Available in festive flocks of four or 16, bit.ly/ Funky-Christmas-Ducks
3
Sensory bookmarks
‘Tis the season for reading! These colourful yet discreet textured bookmarks are perfect for autistic readers of all ages, www. tinknstink. co.uk/arks-sensorybookmark-fidget-packof-3.html
4
Comfy Christmas socks
Who doesn’t love a good pair of Christmas socks? Keep your loved ones warm this winter with some festive footwear
from the Sock Shop, bit.ly/boxed-socks
5
Emotion face fan
Holidays can be stressful for some autistic people. This handy face fan is a great way for your autistic child or loved one to express their feelings, bit.ly/Face-Fan
6
Reversible sequin Christmas stocking A fun-filled gift with a twist – present-opening just got even more exciting with this sparkly stocking from The Sensory Touch, bit.ly/SequinStocking
Remember, when you select the National Autistic Society on your AmazonSmile account, we receive a donation with each purchase, at no extra cost to you!
Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
Winter 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
Do you have a problem our readers can solve? Get in touch and benefit from the experience of your fellow members
Our daughter is a wanderer. One minute she’s in the house, the next she is gone. We are constantly having to watch her. She will leave if she is upset, bored or angry. We know how to prevent this from happening, but – at the same time – she also wanders when she is happy. We can now track her location on her phone, but she often leaves her phone. What can we do to help keep her safe? Anonymous, via our online community For extensive information and guidance about autism, visit our website: This isn’t something I have autism.org.uk direct experience of, but how about a smart watch? These have tracking features. As she would be wearing it, you don’t have to worry about her forgetting to take it with her. There are smart watches for children and adults. In addition, she would be able to contact you on it should she need to. Nicky Gatward Would it be an option to get an Apple watch, which has a locator app on it? Or if this is too expensive, Thank you for your advice, Nicky. You win a copy of jewellery with a locator inserted – techsilver.co.uk have Connecting and communicating with your autistic child: various GPS for the elderly, however it is also suitable A toolkit of activities to encourage emotional regulation for any age and requirement. and social development by Tessa Morton and Jane Gurnett Steve and family (see their article on pages 26-28)
A
Help me next!
How have you dealt with receiving a late (adult) diagnosis of autism – have you told work colleagues? The reason I’m considering this is because I feel the need to explain why I can be inflexible. If I have to cover someone else’s work, it can be really stressful because, if I don’t do something routinely, I struggle. But I don’t particularly get on with most of my work colleagues – and I cannot stop myself from thinking people still see autism as a weakness. Anonymous, via our online community 42 Your YourAutism Autism
Send us your solutions for a chance to win a copy of Autism working: A seven-stage plan to thriving at work by Michelle Garnett and Tony Attwood.
By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.
iStock .com / RobynRoper
Q
Snapshot
I’m a… triathlete Sam Holness is a triathlete who was diagnosed as autistic aged four. He has some communication difficulties, and can get overwhelmed by crowds, loud noises and meeting new people. Here, he writes about his hopes for the future, and his goal to be the world’s first professional autistic triathlete Being an athlete was not an obvious choice. When I was younger, my parents wanted to make sure I stayed active and healthy, so they introduced me to sport. They quickly realised that playing sport gave me a positive outlet – it felt great to do something rewarding and get fit at the same time. I have always enjoyed swimming, and found it the easiest of the three triathlon activities. I actually learned to swim before I could talk. Riding a bike took much longer because my motor skills were weak, and I found balancing difficult. I eventually rode a bike for the first time at 14 years old. When I was 18, I joined a running club. I completed my first triathlon in 2016, and it quickly became my favourite sport. Since that first race, I have finished about 40 triathlons, 5k/10k races and halfmarathons. Running, swimming and cycling has helped to build my confidence and my self-esteem, as well as my physical health. Triathlons are fun and exciting, but I also need to be very focused, relentless and determined at all times. I think being autistic
helps me to train and compete as I am hyper-focused. I never give up or stop until I finish the race, and I don’t get easily distracted. When a race gets hard, I sing the theme song from Rocky or tell my legs: “Keep going. Faster, faster. Don’t give up.” In September, I completed the 70.3 World Championships in Utah. My next steps are to run a sub three-hour marathon and to become the first autistic athlete to compete at the full-distance World Championships in Hawaii. I want to inspire autistic people and other neurodiverse people to take up sport. You never know what you can do until you try it. Don’t let your disability or differences stop you from doing sport. Inspired by Sam’s story? Why not train for one of our fundraising events in 2022? See the full range at www. autism.org.uk/raisemoney
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