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Contents
What’s
new
A round-up of the latest news
Forgotten Voices
Our new campaign in Northern Ireland
My diagnosis Gary’s story
My journey with Walter Pamela’s fight for equality
A day in the life of Rebekah
Enjoying time with her support workers
Changing
futures
Careers adviser Oli shares his journey and motivation
Supporting nonspeaking children
Discovering their sensory needs
The BRIDGING project
Using virtual reality to help autistic jobseekers
Readers to the rescue Getting life insurance
Top tips... for navigating office life
Taking the first steps… in home education
Notebook
Things to read, do and see
Nice to meet you...
Electronic engineer Neville on how his diagnosis made sense
“Nearly 20,000 people joined our #TimeToAct campaign last year”
What’s new?
Our round-up of the latest news and views
Reforms to the Mental Health Act
ZeZe, one of our Young Ambassadors, handed in our #TimeToAct petition to Downing Street
Our new diagnosis hub
Our brand-new diagnosis hub has launched on our website, offering detailed guidance to help autistic people and their families navigate this complex and often difficult process. It includes 13 new advice pages covering topics before, during and after diagnosis. The hub also offers practical resources, including template letters and interactive toolkits to help prepare for an assessment, ask your GP questions and seek postdiagnosis support. There are also two new video series featuring autistic people sharing their experiences of diagnosis and an expert Q&A with our Clinical Director, Dr Sarah Lister Brook. Visit the hub at autism.org.uk/ advice-and-guidance/topics/diagnosis
In July, the new Government announced its plans for the year in the King’s Speech. We were pleased to hear it finally plans to go ahead with reforms to the Mental Health Act. This is an opportunity to change the law so autism is no longer defined as a ‘mental disorder’ and autistic people will not be detained in mental health hospitals just for being autistic.
Nearly 20,000 people joined our #TimeToAct campaign last year calling on the Government to change this law. We’ve been campaigning on this for years and would like to thank all our members who have campaigned with us to end the human rights scandal of autistic people being stuck in mental health hospitals.
We will urge the Government to strengthen the Mental Health Bill before it is passed into law to make sure we have better mental health and social services in the community to prevent autistic people from reaching crisis point in the first place.
Read more at autism.org.uk/our-response-tothe-kings-speech
Introducing World Autism Acceptance Month
We are thrilled to announce that World Autism Acceptance Week will become World Autism Acceptance Month in 2025. Throughout the month of April, there will be lots of different and creative ways for you to get involved and celebrate the month, including fundraising and using our free educational packs for schools. We’ll also be running an autism awareness raising campaign at this time. The next issue of Your Autism will give full details on how you can take part – at home, in schools, or in work – and help us create a society that works for autistic people.
Showcasing autistic talent this Christmas
Our Christmas cards for 2024 are here! We are excited that this year we have a range of cards all designed by autistic artists from our Artrack service in Kent. The artists have created some amazing designs, and we are so excited to launch this range to showcase their talents! To buy your cards, visit autism.org.uk/ Christmas-cards
100 miles challenge
Our 100 Miles in October fundraising challenge is back for its third year. Walk, swim, cycle or even skateboard – that part is up to you. Register and receive your free t-shirt and performance tracker. You can even earn yourself an exclusive National Autistic Society beanie hat and a medal! Find out more and register by 14 October at autism.org.uk/100-miles-in-October
New guide for renters
We have created a guide to help autistic people better understand their rights and think about the reasonable adjustments they need when renting a home. Find out more at autism.org.uk/ rental-housing-guide
Membership news
The National Autistic Society is committed to providing you with a more meaningful membership experience, including a wider range of benefits. To help us continue delivering these valuable services, your membership fee will increase by £2. This adjustment ensures that we can keep offering you a comprehensive membership package, which includes:
● our award-winning quarterly magazine, Your Autism
● peer-to-peer support through our members-only Facebook group
● an invitation to our Annual General Meeting
● regular email updates featuring the latest autism news.
In addition to these benefits, we’re excited to introduce a new series
of exclusive webinars for members and a volunteer membership programme, aimed at expanding our network and enhancing peer support within our community.
Your membership plays a crucial role in helping us provide the essential support services that autistic individuals and their families need to thrive. We sincerely hope you continue to enjoy your membership with us. Please note, the price increase will not include concessionary membership subscriptions.
If you have any questions about your membership, please contact us at membership@nas.org.uk or call our team on 0808 800 1050. Thank you for your continued support in creating a society that works for autistic people.
Member wins two awards!
Congratulations to our member, Fiona Jones, who is celebrating after winning two local awards. Fiona won the Real Life Options Real Hero Award for her work encouraging others to have their say in how services from Real Life should be run. The award was also recognition for her work trying to make things better for autistic people, including getting an autism-friendly swimming session every week at her local pool and autism-friendly Saturdays at her library. Fiona was presented with her award at the Real Life Options Conference at Carnegie Hall, Dunfermline.
Fiona told us: “This was one of the best things I have attended because it was all service-user led. Also, it was broken down very well so we had plenty of resting quiet times in between the busy schedule. I made lots of new friends and felt I made a useful contribution to improving the service.”
In March, Fiona won an Outstanding Achievement Award at the annual Aberdeenshire Club sports awards. She was nominated by her coach, Caroline, at Netball Scotland, who said: “Fiona’s real strength is supporting coaches and players in understanding autism.”
Fiona was delighted to walk on stage to collect her award.
Online autism training
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Forgotten Voices
Our Director, Shirelle Stewart, introduces our new campaign to get short breaks and residential placements for families in Northern Ireland
Autistic children and young people with high support needs are being failed by Northern Ireland’s health and social care system. They can’t get residential care or short breaks because of a chronic lack of places in Northern Ireland. They and their families are unseen, unheard and forgotten.
The BBC’s recent Spotlight programme (bbc.co.uk/programmes/m00234sm) highlighted how families are being failed by a system supposed to support them. To quote one of the parents: “We feel that planning and funding for services for the children with the highest support needs has been non-existent. Our children, mostly non-speaking and not seen often in public because of their challenges, have been at the bottom of the pile when it comes to support from the very services that are meant to help them.”
Autistic children and young people in our communities who have some of the highest levels of need are being denied support. This includes those who do not use speech and need round-the-clock support. Without it, they might
“Families can be pushed to the brink trying to fill in the gaps in support”
become incredibly distressed, leading to harm to themselves or others. Families can be pushed to the brink trying to fill in the gaps in support and are being denied access to short breaks because no places are available.
Short-breaks support is woefully inadequate across Northern Ireland. Many short-break services have been repurposed as full-time residential homes as families have hit crisis. Even so, there are currently no available residential placements in Northern Ireland. With the repurposing of respite centres, more families are hitting crisis, so the vicious circle continues. The Department of Health and the Health and Social Care Trusts are failing in their duty of care to these children and their families. They have failed to plan and commission appropriate services and the most vulnerable in our society are forgotten.
We are campaigning for change. Please sign our petition, at act.autism.org.uk/ page/155586/petition/1, calling on the First and Deputy First Ministers to:
● provide immediate access to short breaks and residential care for those families currently in crisis
● provide the resources needed for the commissioning of services to support autistic people with high support needs and their families, such as short breaks and residential placements
● set up a dedicated strategic task force to address the reforms needed to support autistic people with high support needs.
Read more and show your support at autism.org.uk/forgottenvoices
Danny’s story
Claire tells us about her son Danny. Her family have not had any overnight respite since September 2023.
Danny has the most beautiful big smile and infectious laugh when he is on good form. He adores me just as much as I adore him. We treasure the good days we have with Danny; I only wish we had more of them. Danny is autistic, and has ADHD, a learning disability and a genetic condition that can make life very challenging for him. He speaks, but can find it difficult to communicate his needs appropriately. He requires support in all aspects of his life and suffers immensely from anxiety, which then often leads to distressed behaviours.
Transitions are a struggle, particularly when leaving the family home or leaving me. He needs to know where I am all the time and gets anxious if I leave the room, even for a second.
Family trips are very stressful and often cut short. His siblings miss out and we don’t get to enjoy family outings that many would take for granted. We have never had a family holiday.
Danny needs help with all aspects of his personal care. He can become aggressive during toileting, and showering can be extremely challenging. He is almost taller than me now, and has just turned 12, so this is a big worry for me and makes supporting him on my own near impossible.
We have not had any overnight respite since September 2023. Even before that, overnight respite had not been regular for some time because of the unit being repurposed to residential for emergencies. There is a clear growing demand for short-break respite and residential provision, so why is the Government not addressing this as a matter of urgency?
All we are asking for is a break. I adore Danny, but the daily caring role, looking after him, is beginning to take its toll on me physically. Our lives are hard enough as it is without having to constantly fight for services and support. It’s exhausting and shouldn’t be like this. The Trust needs to take responsibility and give proper help and support to families like ours.
Introducing
the
Know yourself series for autistic teens
Designed by autistic minds, our new Know yourself series helps autistic teenagers explore their identity, needs and preferences. Make the most of our toolkit, featuring:
• online workbooks
• worksheets
• inspiring videos from our autistic young ambassadors. It’s all created to empower every young autistic person to be who they want to be!
Discover more with our free resources at autism.org.uk/KnowYourself
The National Autistic Societyis acharity registeredinEngland andWales(269425) andinScotland(SC039427)
“A late discovery”
Gary shares what led to his autism diagnosis at the age of 53, and how his experiences feature in a new short film
In 2002-2003, I was bullied out of a fantastic job; that’s when my mental health decline began. I struggled when my mother became seriously ill. I’d lived at home with her all my life; she really was my rock and kept me going through everything. When she died, the bottom fell out of my world. The council said I had to leave the house within four weeks. I broke down and was referred to a mental health unit.
At the unit, staff said I was showing signs of autism. They sent me back to my GP, who referred me for an autism diagnosis, which I had within seven months. After the diagnosis, I was relieved, and my struggles through life made sense. Respect to my mother, who helped me through it all.
Autism is very much a part of me; it doesn’t make me less or more – just me, a bit different. I wouldn’t want to be ‘cured’ because I don’t know who that person would be, and I think I’ve turned out well. Thinking back over my life, I was very proficient at
masking. My autistic brain would feed me stuff that made people laugh, and if you make people laugh, they usually don’t bully you.
About
the film
The film began with a post on a local autism Facebook page. A student crew were looking to film an adult with a late diagnosis. I decided to do it to speak out for those who can’t. And I did it because I want everyone to know we are mostly just ordinary people who need a little extra help and patience at times.
I didn’t realise how stressful the filming would be and wondered if I’d made the right decision. The interview about my life was quite emotional and a lot like my assessment for autism. But Charlotte, the director, is also on the spectrum, so she understood what I was talking about.
I was moved and gobsmacked when I saw the film, as this was me seeing myself as others see me. I hope it gets a wide viewing. I also hope that anyone who sees it has a better understanding of us. Or, if they are thinking about getting a diagnosis, they’ll see it’s a positive step that gives a better understanding of how our lives have been shaped.
Gary (centre) with two friends
My journey with Walter
Pamela tells her story of love, resilience and the fight for equality
Raising my son Walter has been a journey of profound love, persistent advocacy and relentless resilience. As a Black mother, the experience of raising a bi-racial autistic child has unveiled layers of systemic inequalities and cultural misunderstandings that many cannot fathom unless they walk in similar shoes. My mission to support Walter and children like him is driven by the joy he brings to my life and the
many hurdles we have faced. This journey has been as much about embracing Walter’s unique world as it has been about fighting for the recognition and support he deserves.
Why do we have to talk about race?
Talking about race and autism is not optional − it’s essential. For too long, the voices of those impacted by apparent systemic racism have been marginalised or ignored. This silence has perpetuated a cycle of misunderstanding, inequity and injustice. As a Black mother of a bi-racial autistic child, I’ve seen first-hand how race and neurodiversity intersect to create unique challenges that are often overlooked or misunderstood by society.
Walter is autistic and was non-speaking until the age of six. From the moment I had concerns about his development, I felt I encountered systemic biases that made accessing support an uphill battle. When I first went to my GP with worries about Walter, I believe I was dismissed as an over-sensitive first-time mum. The second time, I felt that my parental skills were questioned, leaving me feeling devastated and inadequate. I have no doubt that it wasn’t until my husband, Alex – who is white – took Walter to the GP that we were taken seriously and referred to a paediatrician. This stark difference in treatment was a painful reminder of the biases that exist within our systems. We must address these biases head-on to ensure that all children receive the care and attention they deserve, regardless of their race.
Delayed diagnosis and misdiagnosis
A study highlighted that Black autistic children are typically diagnosed three years later than their white peers, showing a significant disparity in early diagnosis and access to interventions (American Academy of Pediatrics News, bit.ly/timing-diagnosis). This can have profound impacts, as early intervention is vital for improving outcomes for autistic children. Reasons for this delay include cultural misunderstandings. Healthcare professionals may misinterpret cultural behaviours as signs of other conditions, leading to delays or misdiagnosis of autism in Black children.
Pamela and her son Walter
Implicit biases can also result in Black children being underdiagnosed or receiving less attention than white children.
In addition, there are financial barriers that limit access to services. Economic challenges make it difficult for many Black and minority ethnic families to access private healthcare services. Services are often less available in areas with high Black and minority ethnic populations, limiting access to support.
Support services frequently lack cultural competence, failing to meet the specific needs of Black and minority ethnic families. Apparent systemic racism has led to mistrust of medical and educational institutions, making Black and minority families hesitant to seek help.
There’s limited research on how racial and cultural identity affects autistic Black and bi-racial children, leaving their specific needs poorly understood and unaddressed in support systems. Other challenges include judgement and stereotyping. Black parents often face unfair judgements and stereotypes,
What are the solutions?
Listening to those affected: We must amplify the voices of Black and minority ethnic families raising autistic children, acknowledging and addressing their unique challenges collaboratively.
Culturally competent healthcare
● Training and education: Train healthcare professionals in cultural competence, communication styles, parenting practices and implicit biases.
● Inclusive diagnostic criteria: Develop diagnostic tools that respect cultural and linguistic diversity.
Equitable education and support services
● Early intervention programmes: Ensure culturally sensitive early intervention programmes are accessible to all.
● School training and resources: Give schools autism and cultural competence training and inclusive curricula.
● Parental support networks: Fund networks offering emotional support, practical advice and advocacy training for parents in underrepresented communities.
“I felt I encountered systemic biases that made accessing support an uphill battle”
Research collection and advocacy
● Focus on minority ethnic communities: Increase research funding on the experiences of autistic Black and ethnic minority children.
● Community advocacy: Empower underrepresented communities with advocacy training and awareness campaigns.
Public awareness and representation
● Inclusive media: Promote diverse representation in media featuring autistic characters from multicultural backgrounds.
● Awareness campaigns: Educate the public about autism and Black/minority ethnic experiences, challenging stereotypes.
Supportive community environments
● Community engagement: Collaborate with minority ethnic community leaders to provide autism education and promote inclusion.
● Judgement and understanding: Combat stigma through workshops, empathy programmes and safe spaces for parents.
Pamela feels sure that it was not until her husband, Alex, took Walter to the GP that their concerns were taken seriously
overshadowing genuine concerns about their children’s development. Limited community awareness and understanding of autism leads to less support from extended family and the community. These issues can result in social isolation for the child and family, who may feel misunderstood and unwelcome.
The importance of representation and creation of Just Like Me Books
My experiences led me to create Just Like Me Books, the first interactive and inclusive augmented-reality children’s books. These books, paired with a free app, bring stories to life when a phone or tablet is placed over the pages, overlaying digital content onto the physical pages. This multisensory approach engages different learning styles, making literature accessible and exciting for all children, including those who are autistic.
Why this work matters
Representation is crucial. When children see themselves in stories, it validates their
experiences and fosters belonging. For autistic children, relatable characters can be empowering. For others, these stories promote empathy and understanding, breaking down barriers. By addressing race and neurodiversity, we aim to create a more inclusive future. Children who read diverse stories grow into adults who value and champion diversity. This work is about shaping a more compassionate, understanding and inclusive generation.
Raising Walter has been a journey of immense love and relentless advocacy. The challenges we face are compounded by systemic inequalities and cultural biases, making it all the more important to fight for recognition and support. Through Just Like Me Books, I strive to create a world where every child sees themselves reflected in the stories they read and feels empowered to succeed. By sharing our story and advocating for change, I hope to pave the way for other families facing similar challenges.
Walter’s journey from a frustrated, nonspeaking little boy to a confident, book-loving ten-year-old who never stops talking is testament to the power of advocacy and representation. His transformation fuels my dedication to continue fighting for those whose voices often go unheard.
Pamela Aculey – author, mother of three and founder of Just Like Me Books
Watch Pamela’s film on our social media channels in October
A day in the life of… Rebekah
Rebekah has lived at one of our residential services for many years. She shares a typical day in photos and what she enjoys doing with her support workers, Sophie and Heidi
My home is nice and big, and I live on my own. All my decorations are pink and purple, and I have photos of friends and family up on my walls. I have a garden with flowers, grass, ornaments and butterflies! There’s a table and chairs with an umbrella. I have dog and sheep decorations on the fence, plus blackboards where I write positive things.
Sometimes my day is filled with music, singing and playing drums. I love music therapy with Sophie because it’s fun. Sophie does a lot of activities with me. She also helps me with trips out, make-up and performances.
Then I might have a trip to the sensory room.
I love sunbathing in my garden, cooking and baking. Seeing people for tea and coffee, spending time with them, enjoying the weather outside. My family visit quite often, once a month, and I have calls and Facetime with them. They always do nice things with me when they visit, and I love them very much.
I go out some days too, to see a friend at the local park, go trampolining, walk to the shop or the disco. Going out and travelling is difficult as I have very good hearing, but Sophie and Heidi help me.
Rebekah features in our Impact report 2023/24, showing our impact in the first year of our Vision to Reality strategy. Read the report and watch Rebekah’s film at autism.org.uk/impact
We have 22 residential services across the UK, providing person-specific support for autistic adults with a wide range of needs. You can find out more at autism.org.uk/ what-we-do/adult-residential-services
Take your place on the start line with Team Autism!
Do you have a ballot place for an upcoming running event? We would love you to join us and help transform the lives of autistic people!
We have a full list of events open to ballot place holders.
Scan the QR code to become part of Team Autism.
You’ll receive:
•a free National Autistic Society running vest
•Welcome pack and fundraising support from our dedicated events team throughout your journey
•an official cheer point for your friends and family to cheer you on
•and more…
With a ballot place, you have no minimum fundraising target, and you’ll get to enjoy the same benefits as our charity place runners.
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and also a company limited by guarantee (No.1205298) registered in England. Its registered office is Weston House, 42 Curtain Road, London, EC2A 3NH.
Changing futures
Oli, a careers adviser to autistic students, shares how his journey motivated him to help others find their path
Interview: Helen Wilson
When did you find out you were autistic?
I was 11 years old when I was diagnosed. I found it really tricky and almost felt that there was a script I was required to follow for the rest of my life. I was told that there were lots of things that I couldn’t and wouldn’t be able to do, which just frustrated me further.
What inspired you to become a careers adviser?
Bad careers advice! I received vague advice from someone at my school. They even told me not to aim too high, as ‘autistic people
don’t have to work’, and said: “It’s okay for you to not work, maybe just aim for some volunteering.”
After I left school, I bounced between different roles. It wasn’t until I went on a Job Centre Employability course that I realised I wanted to help other people find work and never be in the position I have been in. I now work for Outcomes First Group, supporting its independent schools across the south of the UK.
What were your experiences like at school?
Not brilliant. I always felt like a problem and that my autism was a problem, too. I spent most of my education either overwhelmed or isolated. Because of my sensory difficulties, I found the classroom an intimidating and overwhelming space, so I behaved in a way that removed me from that space.
It wasn’t until starting my current job, working with autistic individuals, that I realised that was why I behaved in the way I did. I wasn’t coping, and instead of supporting me to identify why and put measures in place, my school removed ‘the problem’.
How have your experiences helped you to engage with young autistic people in your role?
First, I feel I can empathise with my students more than other staff members who have never been in their shoes. Second, it gives the young people I work with a role model – an individual with similar difficulties and strengths who is succeeding and feels positively about autism as a whole.
Oli can empathise with his students
“We can impact a student’s entire adult life based on the words we say and the value of the knowledge we impart”
What advice would you give to younger or out-of-work autistic people who feel like they don’t know what to do?
What impact have you seen when autistic pupils receive aspirational careers education?
When our students arrive at school, they are often terrified of the future and actively avoid lessons and topics that discuss it. Once they buy into the careers education we provide, the switch is tangible and exciting. Suddenly, the future isn’t a big, scary and intimidating place. It is an opportunity to excel, be passionate, enjoy and look forward to. We can impact a student’s entire adult life based on the words we say and the value of the knowledge we impart.
How do you think careers advisers in mainstream schools can work more effectively with autistic pupils?
They need to slow down, build trust first and help individuals in an honest and supportive manner, instead of using careers advice as a tick-box exercise or an afterthought. Careers education should be the fundamental core of all aspects of education, rather than an assembly and a 45-minute advice session once a year.
That they are doing okay! It is perfectly valid for them to not know what they want to do, and sometimes we just have to stop for a moment, refuel and reflect before starting to move on again.
Take the time to look at what parts of other jobs or education you really enjoyed. Find that skill, then look around at different jobs that encompass that skill. Try it! If it works and you enjoy it, that is amazing, but if it doesn’t work, you have still learned something from that experience.
Seek advice from someone you trust and find your own path. Success is different for each individual and isn’t a linear path.
Supporting the sensory needs of non-speaking children
Paul and Jade share how they discovered their children’s sensory needs and what they do to support them
Paul and William’s story
My seven-year-old autistic son William doesn’t speak. He initially developed speech as a young toddler, but these early words are now forgotten, or perhaps William just doesn’t see them as important. More recently, we’ve encouraged William to use the Picture Exchange Communication System (PECS) and other recognised techniques to aid communication. However, William has been unimpressed and disengaged with these efforts, preferring his own forms of
expression, which centre on handleading – or, put less elegantly, dragging us to what he wants assistance with. We respect William’s preferred communication style and use his unspoken cues to try to understand his world.
William’s world is exciting and highly sensory. Many autistic individuals feel overwhelmed in busy, unpredictable environments because of sensory overstimulation. However, William is generally not like this and could instead be described as a sensory seeker. This means he seeks
out stimulation for his senses, which has influenced everything from his choice of drink bottle to a newfound passion for theme-park rides. Nobody knows exactly why children like William show such sensory cravings, although these clearly allow for emotional regulation in different environments. For William, the stimulation gained seems to provide a combination of comfort and enjoyment as he goes about his day.
Discovering William’s sensory needs has been one of our key growth experiences as parents. It would be easy to assume that his expressions of these needs represent bad behaviour. For example, William consistently seeks stimulation through climbing and balancing. He will attempt to ascend anything he can, including furniture and his caregivers. This form of sensory seeking is quite common in autistic individuals and relates to the proprioceptive and vestibular senses – our perceptions of movement and spatial orientation. These are the same senses William probably triggers during an exciting rollercoaster ride. More regularly, we might accommodate needs of this
kind by giving William access to a staircase in a new setting or allowing him to perch in high places in our house, providing it is safe to do so.
William additionally has significant needs for oral sensations. These manifest as attachments to dummies and a desire to bite, chew or suck items, which might again be construed as socially inappropriate. However, we take care to weigh external opinions against William’s comfort and happiness. Moreover, William’s ability to access a range of settings without getting upset is greatly enhanced if we can accommodate his oral sensory needs. As a result, we always provide William with a supply of dummies, chewable snacks and a sports-style drink bottle, which he can choose to access whenever he wants.
William’s sensory needs may seem difficult to decipher, especially with his lack of words. However, our
parenting journey has taught us to watch, listen and learn from him in more subtle ways. My advice for parents and carers in similar situations would be to trust their child to find ways to communicate their needs. William likes to handlead, and perhaps our biggest service to him is simply to let ourselves be led.
Jade, Joe and James’ story
I have two autistic sons aged eight and ten, and both boys have alternative communication needs. Joe, my eldest, is nonspeaking, and we communicate using visual aids and PECS. James, my youngest, has lots of verbal language, but his speech is mostly echolalic (repeating phrases/words) with limited back and forth conversation. As such, we communicate differently in our house and it’s important that we pick up on more subtle communication from the boys. The boys were diagnosed as autistic at ages two and three because of their communication differences and this was the focus of their support initially. It took us a while to recognise their sensory needs. Joe is a sensory seeker and I wish I had focused on sensory input much earlier for him. He loves sensory play and gets excited in stimulating environments such as the supermarket (the opposite to his brother). James has more sensory avoidant tendencies, in particular with noise sensitivity. While we saw this earlier thanks to hand dryers and motorbikes, it took me longer to realise the significance of the impact on him. Pre-school and school have been particularly challenging environments for him with so much unpredictable noise, but since he has been comfortable wearing headphones at school, it has made a huge difference for him. It took us a while of offering and practising using
Paul’s company, The Autism Adventure, was inspired by his life with William and now provides online tutoring for autistic students at all stages who struggle to attend larger educational settings. Paul and William recently completed a sponsored buggy marathon with the goal of funding free sessions for some of these students. Please see Paul’s company website (theautismadventure.co.uk) to access tutoring, educational resources and further information. >
“Even when a child can communicate, they still struggle to communicate sensory needs”
the headphones at home before he was familiar and felt safe with them. I need to be more observant about the boys’ likes and dislikes when it comes to sensory activities/ adaptations. I do use visual aids and PECS with the boys, but, as they have got older, it is more about having access to sensory items all the time so they can choose what they need and access it when they need it. Often, even when a child can communicate, they still struggle to communicate their sensory needs, especially when overwhelmed. In most rooms of our house, we have sensory fidgets that can be accessed at any time, including sensory chews. I also have my pockets filled when we are out and about.
I have pictures in the house of anything they need help to access, such as a picture of the trampoline by the back door so they can use that to ask me to go out in the garden.
Visiting SEND groups and sensory play activities has been helpful to identify items that really help the boys with their sensory needs. It was at groups such as this that we could try things including body socks and gym balls, and see what the kids were drawn to.
I would recommend using local sensory lending libraries or SEND groups to try different sensory equipment.
The key for me is observing what the kids are enjoying and finding ways to get more of that input for them. Speaking to other SEND parents is always helpful when looking for ideas.
Jade blogs about autism and communication at The Autism Page, theautismpage.com
Hear more from Jade and Paul on Autism Central’s new sensory processing podcast series. Learn more about what sensory processing is and the differences that autistic people can experience. Listen at autismcentral.org.uk/podcast
Our expert multidisciplinary team specialises in:
• co-occurring mental health needs
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• second or third opinions. Enquire now at:
Building bridges
Anoushka Pattenden, our charity’s Research Partnerships and Participation Manager, introduces a new project on using virtual reality to help autistic jobseekers and employees
We know that finding and maintaining employment is an issue for so many autistic people. Many employers lack autism knowledge and understanding, and therefore don’t know how to provide the right support or adjustments. Autistic jobseekers and employees are disadvantaged in many ways, from navigating stressful interview scenarios to the social and sensory overwhelm of a work environment.
BRIDGING is an innovative research project using personalised virtual reality (VR) technology to bridge the gap in employment of autistic people. It is supported by the National Autistic Society’s Evidence and Research team.
Aims and outcomes
The team will create a set of VR scenarios to help autistic people experience job interviews, as well as situations that often arise in those first few days of a new job. By having some knowledge of what to expect, jobseekers may be more confident and successful at finding and keeping jobs.
The focus is not on jobseekers alone. The team will produce training packages for autistic jobseekers and also for employers. Employers are expected to increase their awareness of the potential barriers for autistic people, and know how to identify the right support strategies and
reasonable adjustments for the individual. The long-term aim is for more autistic people in the UK to be successfully employed, in workplaces that are well-informed and supportive.
Who’s involved?
The BRIDGING Project brings together researchers from the Universities of Plymouth, UWE, Coventry, Warwick and Birmingham. It also combines tech companies i3 Simulations and Wolfram, two charities – the National Autistic Society and the Kimel Foundation –and the NHS in Bristol, North Somerset and South Gloucestershire, and in Coventry and Warwickshire. It is led by Dr Michael Loizou, from the University of Plymouth’s Centre for Health Technology, and funded by the National Institute of Health Research (NIHR).
Importantly, the project team includes autistic people, as well as parents of autistic people. It is guided by a steering group of autistic
people with a mix of workplace experiences. This group meet at key points throughout the project to give feedback, ask questions and gently challenge the team.
“This is a valuable and innovative piece of work that is guided by autistic people,” said Dr Jude Brown, Head of Evidence and Research at the National Autistic Society. “It supports employers and helps them to understand the advantages of employing autistic people and to increase understanding of how best to support them in the workplace. This is going to have a positive impact and help autistic people to find and keep jobs.”
Designing and testing
The project is currently at an important and exciting phase. VR partners i3 Simulations have co-produced the first mock-up interview scenario with the project partners and our autistic co-creators, which allows the user to
respond to practice questions at their own pace, selecting answers from the multiple choices provided. Users can also control elements such as how many interviewers are in the room, background noise levels and complexity of questions. There are no right or wrong answers. The purpose is for users to familiarise themselves with typical scenarios while in a safe environment that they can customise to preferences and comfort levels.
Facilitated by the Kimel Foundation, the mock-up VR interview scenarios will now be tested by young job-seeking autistic people who will report on ease of use, comfort and effectiveness.
Heart rate monitors will simultaneously track and record users’ physical signs of potential stress during the VR experience. This data will be analysed and the programme tweaked accordingly to minimise stress levels for the participant.
Future plans
We are just over a year into this three-year project, with future phases including further VR scenarios and wider testing. We hope that this pilot will pave the way for a largerscale project, which will include use of VR for employees, wider testing and wider access to these tools for autistic jobseekers and employers.
You can read more about BRIDGING at plymouth.ac.uk/ research/centre-for-health-technology/bridging-project If you are an autistic person interested in getting involved in research projects and want to hear about relevant opportunities, you can join a mailing list by emailing research@nas.org.uk
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“The National Autistic Society is the only environment where I’ve been surrounded by a group of autistic people, so that was a huge deal for me.” Rosie, artist and Young Ambassador of the National Autistic Society
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Readers to the rescue!
Do you have an issue our readers can help with? Get in touch and benefit from the experience of your fellow members
I tried to get life insurance recently and was denied . Is it harder or more expensive for autistic people to get life insurance? Can anyone share their experiences and advice please?
Helen
AMyself and my daughter have used Cura, which was absolutely wonderful. I saw the company recommended on social media for autistic people who were struggling to get a life insurance policy. The organisation did most of the information for the application via email and some parts by telephone.
For extensive information and guidance about autism, visit our website: autism.org.uk
You can contact Cura by: Telephone – 0800 567 7450 Email – info@curainsurance.co.uk Or request a quote via this link: curainsurance.co.uk/ quote
I hope you are successful. No one should be denied life insurance.
Kind regards,
Sarah
Post your problems or answers on Facebook at the National Autistic Society members’ group or email YourAutismMag@nas.org.uk
Help me next!
Does anyone have any advice about regulating emotions during the Christmas period – especially with the changes in routine? One thing I find hard is opening presents and feeling like I have to act a certain way. Do any other autistic people also struggle with Christmas?
Anon
Send us your solutions for a chance to win an autism-related book of your choice.
Top tips… for navigating office life
Maura Campbell, who is autistic and the co-author of Just the job!, gives her advice for a good day at the office
I grew up being told off for behaving in ways that weren’t the done thing, and feeling mightily aggrieved that nobody bothered to tell me what the done thing actually was.
When I began working in an office, many years before I was identified as autistic, I encountered a whole new set of unwritten social rules and expectations. Yet more stuff that people just knew. Apart from me.
I muddled through as best I could, often feeling anxious because things seemed a bit off, but I hadn’t a clue why. I invested a massive amount of time and energy studying what was going on around me –a bit like David Attenborough in Frozen Planet, but without the penguins. It paid off, as I’ve enjoyed (survived?) a long and varied career. So, when Debby Elley suggested we
write a guide to help autistic employees navigate office life, I immediately agreed. I relished the prospect of working with her on a project that will, hopefully, allow others to avoid the confusion, frustration, physical discomfort and sting of embarrassment I so often experienced.
In writing this book, we were driven by a need to plug a gap in provision.
The focus can often be on supporting autistic people into work, but, once there, we want them to be able to stay long term.
Both of us recognised the need to help autistic people self-advocate, without having to act in ways that feel unnatural or inauthentic. As a result, our book seeks to analyse and explain perplexing non-autistic behaviour in a humorous way, offering suggestions rather than dictating solutions.
For instance, you can choose whether to share with your employer that you’re autistic. The downside of being open is that some may make inaccurate assumptions; I’ve lost count of how many times I’ve had to explain to people I’m not, in fact, a tech genius. But being open about your strengths and challenges should make it easier to ask for reasonable adjustments and ensure your skills are put to best use. In Just the job!, we weigh up the choice and let the reader decide for themselves.
Office work often involves competing demands and shifting priorities, and we share some tools to help you manage these and avoid burnout, even if you struggle with task inertia or other executivefunctioning challenges. You may need to let go of your natural perfectionism and be a bit less conscientious (says the woman who once drafted a speech for her boss while running a sky-high fever).
We try to demystify office small talk by explaining the purpose it serves. If in doubt, just talk about the weather – non-autistics never tire of discussing meteorological conditions (and we’re supposed to be the obsessive ones!). We also offer some tips on how to give and
receive feedback. Bizarrely, when people ask for ‘honest feedback’, they don’t actually want you to be that honest. I speak from experience. Honestly.
Most importantly, we encourage you to look after yourself. I wish I’d understood earlier in life what things drain or overwhelm me, what helps to restore me and how best to avoid or minimise stressors.
Maintaining a sense of perspective has sometimes been difficult for me, especially when things go wrong, but we hope that the book will help our readers to do just that… and take comfort from the knowledge that one of its authors is speaking from direct experience.
The world needs our skills, and we deserve rewarding careers as much as anyone else. As more of us succeed in the workplace – whatever that success happens to look like –the more offices will become flexible enough to allow us to thrive.
Just the job!A light-hearted guide to office life for the autistic employee is published by Jessica Kingsley Publishers. An audio version accompanies the paperback, which is available on Amazon and at all main bookstores.
Debby Elley is co-founder of AuKids autism parenting magazine, co-author of The ice-cream sundae guide to autism and mum to autistic twins, one of whom is about to embark on the world of work.
Maura Campbell is a senior civil servant, writer and autistic advocate, and has an autistic son. She is co-author of Spectrum women – Walking to the beat of autism and Spectrum women –Autism and parenting.
The book’s images are created by autistic illustrator Tim Stringer.
Giveaway
We have two copies of Just the job! to give away to members. For a chance to win, please email your name and postal address to YourAutismMag@nas.org.uk by 31 October 2024, putting ‘Just the job’ in the subject line. The winners will be announced in the next issue.
Taking the first steps in home education
Our Autism Help team explains the laws around home education in the four nations and what you need to do at the start
Parents may choose to educate their autistic child at home for various reasons, including their child’s sensory needs, which may make a school environment noisy, distracting or even painful to them. Autistic children may find it hard to
concentrate or behave in the way schools expect, which may prevent them from reaching their full potential. Or parents may feel their child’s needs are not being supported at school and they can provide a more appropriate
education. Educating your child at home may be the right option for them, but it’s vital to understand what that entails before making any decisions. Here we set out what you need to do when you start to home educate, based on where you live.
Wales
Every parent has the right to home educate; this is conditional on the parent fulfilling the requirements of section 7 of the Education Act 1996 (legislation.gov.uk/ukpga/1996/56/ section/7). This means that, by law, your child needs to receive an efficient full-time education suitable to their age, ability and aptitude, and to any additional learning needs (ALN).
If you decide to home educate, the next step is to de-register your child from the school roll. This is done by writing to the school with your intention to home educate. Your child will then be removed from the
admissions register, and the school will notify the local authority ten days after the date of removal.
If your child attends a special school, you must notify the school that you would like to home educate.
The school will inform the local authority of the parents’ wishes, but will not remove the child’s name from the register until agreement is received from the local authority.
Once you are home educating your child, your local authority might offer the following support:
● the opportunity to sit examinations in an identified examination centre
● access to local authority
counselling services
● access to Careers Wales services
● ALN advice in line with ALNET 2021 31
● free trips to Cadw heritage sites
● access to the local authority offer of support for homeeducated children.
There is no legal duty for your local authority to monitor your child’s education at home routinely.
Informal enquiries and annual updates should suffice, unless there are concerns about your child’s education or wellbeing.
Children with a statement of special educational needs or Independent Development Plan (IDP)
If your child has a statement or IDP, you still have the legal right to home educate them, and your local authority will be responsible for maintaining and reviewing the statement or plan for as long as it remains in force.
You don’t have to make the provision set out in the statement or plan, but you do have to take account of your child’s additional learning needs. You must make
“In Wales, if you decide to home educate, the next step is to de-register your child from the school roll”
sure that your child receives an education suitable to their age, ability and aptitude.
For more information, see the Welsh Government’s Elective Home Education Guidance 2023: gov. wales/sites/default/files/ publications/2023-05/electivehome-education-guidancemay-2023.pdf
Scotland
Section 30 of the Education (Scotland) Act 1980 states that: “It shall be the duty of the parent of every child of school age to provide efficient education for him suitable to his age, ability and aptitude either by causing him to attend a public school regularly or by other means.” This means parents have to ensure their child is educated, which usually involves sending them to a local authority school, but it could mean sending them to an independent school or providing home education.
Parents do not require consent to home educate if their child has not yet attended school. However, if your child is already attending school, you must get consent from the local authority to withdraw them from school. It is recommended that local authorities are in regular contact with families that are home educating, but this is not a statutory requirement.
It is important to note that a local authority does not have the same duties to identify and meet a home educated child’s needs as they do if the child or young person is attending a local authority school or a placement arranged by a local authority. For more information on home schooling, contact the Scottish Home Education Forum website at scothomeed.co.uk
Northern Ireland
Article 45 (1) of the Education and Libraries (NI) Order 1986 states that the parent of every child of compulsory school age should ensure their child receives efficient full-time education suitable to age, ability and aptitude, and to any special educational needs they may have, either by regular attendance at school or otherwise.
Some parents choose to meet this duty by educating their children at home. Our home education resource explains how to go about requesting home education in more detail - see autism.org.uk/advice-andguidance/topics/education/ education-choices/northernireland/home-educating-your-child.
You may find the Home Education Northern Ireland website useful, hedni.org, which is run by a group of parents supporting each other with home education. You can also access
guidance from NI Direct at nidirect. gov.uk/articles/educating-yourchild-home
England
Parents have a duty to ensure their child of compulsory school age receives a suitable education, either by ensuring regular attendance at school or otherwise. This essentially means the parent must ensure their child attends school for education or that they receive a suitable education at home.
If your child is not registered to go to a school and you would like to home educate, you do not need to inform anyone that you will be electing to home educate. However, the local authority (LA) may contact you to ask how your child is being educated.
If your child is registered at mainstream school and you would like to home educate, write to the school about your intention and ask that your child’s name be removed from the school roll.
If a child has an education, health and care (EHC) plan and their plan names a specialist school, the parent will need to ask the LA for consent to remove their child from the school and home educate. This is not usually a lengthy or complex process. If the LA refuses, parents can apply to the
Secretary of State for a direction to remove the child from the school roll.
If a child has an EHC plan, parents can still ask to home educate; however, this may have an impact on whether the LA has a duty to provide the provision named in Section F of the EHC plan. If the LA agrees home education is the right placement for the child, they should amend the EHC plan to reflect this and they would remain responsible for ensuring the provision within Section F is secured. If the LA felt the child’s needs could be met in a placement and the parent decides to home educate, the LA would name a school or placement type within the EHC plan. Then, if the parent decides to home educate, the duty on the LA to secure the provision within the plan is lifted, but it must continue to review the plan annually.
The Child Law advice website includes information about what the LA can do to check the education provided is suitable: childlawadvice. org.uk/information-pages/homeeducation
Find more information on home education at autism.org.uk/educationchoices and at:
Education Otherwise: educationotherwise.org
Home Education UK: homeeducation.org.uk
Home Education Advisory Service: heas.org.uk
Notebook
Everything you need to read, do or see
Dinosaur BBC iPlayer
VERDICT:
Entertaining, unusual and relatable
Created by Matilda Curtis and Ashley Storrie, this six-part sitcom is about an autistic Glasgow palaeontologist, Nina (Storrie), who has her everyday life shaken when sister Evie announces that she is about to marry Ranesh. They have only been together for six weeks. What I like about the sitcom is how Nina manages to participate in activities that autistic young people find challenging, such as meeting Ranesh’s father, Sachi, and bonding with Lee, who runs the coffee van outside her workplace at the museum.
love to be able to just be how my brain wants to be without having to apologise for it or ask permission, but that is not the world we live in.”
According to Storrie: “The good thing about being Nina is she’s an unmasked autistic person. I would
Unlike BBC One’s drama series, The A Word, about a family struggling to understand a young boy’s behaviour, Dinosaur showcases Nina’s behaviours depending on how the day goes for her.
the run of recent dramas, dramedies and documentaries that have given autistic people a long-overdue voice and prominence on television, while, on occasion, not giving them room to be anything beyond people with autism.”
“It showcases the real experiences of autistic young people growing up”
For example, in episode one, when her boss invites Nina to go bowling after work, she rejects it because of her weekly activity of ‘takeaway Tuesday’. But when she becomes uncomfortable because Ranesh comes on the day, she changes her mind on the spot and goes bowling with her work colleagues.
After the show’s release in April 2024, The Guardian journalist Jack Seale said in his review: “Dinosaur feels like a natural progression from
As an autistic young person, I found Dinosaur entertaining, unusual and relatable. It showcases the real experiences of autistic young people growing up and going through sudden changes in life, just like me.
It illustrates conquering everyday tasks such as socialising, problemsolving and doing something outside your comfort zone.
I recommend giving this new sitcom a try, as you’ll be surprised when you watch it.
Max Ferreira, author at Exposure, the youth communications charity: exposure.org.uk
Is this autism? A guide for clinicians and everyone else
AUTHOR: Donna Henderson and Sarah Wayland, with Jamell White
PUBLISHER: Routledge
PRICE: £27.99 (ebook £27.99)
VERDICT: A neurodiversity-affirmative deep-dive into autism
Very few academic publications give as much attention to the different characteristics of autism in a way that validates autistic strengths and people’s lived experience. As the name suggests, this book is not just for clinicians. It is written in an approachable style, with quotes from hundreds of autistic contributors.
If you’re a fan of a research deep-dive, you have a focused interest in autism or you’re looking for answers about some of the things you experience, this is a great book. It’s full of insights into the diagnostic criteria and modern understanding of autistic daily life, such as masking and burnout.
Helen Wilson, Copywriter at the National Autistic Society
Autism-approved products
Giveaway
We have a copy of Is this autism? to give away to a member. For a chance to win, please email your name and postal address to YourAutismMag@ nas.org.uk by 31 October, putting ‘Is this autism?’ in the subject line. The winner of last edition’s giveaway, for a copy of Girl unmasked, is Kath Pace Congratulations!
Our charity now has a panel of autistic people and their families testing products. The latest product to be awarded autism approval is:
Premier League Adrenalyn XL Trading Cards
Panini
One tester said: “I would use them while with someone, to have something to focus on to prevent anxiety or stress.”
A family member tester added: “We liked how they look and you can also play games with them. The cards are so relaxing to play with and talk about – a great social-interaction tool.” panini.co.uk
Nice to meet you... Neville
Our member Neville writes about his diagnosis, working for himself and how getting a dog improved his communication
I am a 58-year-old father of two. I work for myself in electronic engineering, and most of my interests involve sound or music.
I was diagnosed about ten years ago. It was very helpful; a lot of things suddenly made sense that hadn’t before. It was also helpful to my family, as my son is autistic, too.
I have been lucky in that the effects of my autism, even before I was diagnosed, rarely left me feeling disadvantaged. I am naturally confident, and my academic intelligences meant that I breezed through school and university. I did notice that I couldn’t tell what other people thought about my behaviour, but I decided I didn’t care, as their reactions, obvious or not, were definitely their problem, not mine.
I realised at a young age that I was different, but this was mainly because of the things that I could do better than those around me. It took until well into adulthood to realise that there was a whole world of perception and communication that I was barely aware of. It never stopped me getting into relationships, but it did mean that I missed many of the more subtle advances from neurotypicals.
After my diagnosis, I read about sensory overload, and I realised that my sight was quite prone to this. I can drive but find it tiring after a while. Even walking somewhere unfamiliar is tiring, especially in forests and built-up areas. Walking in fields and on beaches is much less of a problem because most things are in the distance, and images change slowly. With awnings or branches coming close to my head, large parts of my visual field change, and the quantity of
“I was very pleased when Chris Packham ‘came out’ as autistic”
visual information causes overwhelm. By contrast, my hearing never causes overwhelm. Many people tell me that I can hear things that they can’t, and my hearing brings me most of my pleasures.
Working life
A placement while I was at university made me realise that I would never work in a large organisation. I have always worked for myself, apart from a few years when I was headhunted by a small electric vehicle manufacturer. My business is still expanding. Another huge revelation came with getting a dog. Because I work from home, he became very much my constant companion. Then the most amazing thing happened: my dog taught me how to communicate with him nonverbally. I gradually became an expert in dogs’ body language. Of course, I then found that most other aspects of my communication had also improved, and some of the veils between other humans and myself were lifted. I still think that any questionnaire that asks about languages should include music, maths... and dog, all of which I can speak.
Several years of my son’s development were difficult because we are both autistic, but different aspects of autism dominate, and I found it very hard to empathise. My daughter didn’t sleep much until she was five, but I had learned to nap by then to keep me
feeling on top of things. I found that I can let myself be taken over by role-playing, and this was great when they were babies. I would literally get down to their level and be a baby with them. I’m sure this was of benefit to their development, and it made the early years much more interesting for me.
I was very pleased when Chris Packham ‘came out’ as autistic. It felt like a big step forward in the general public’s perception and understanding. Of course, I still encounter misunderstandings and prejudice, and probably notice them more than I used to. Fortunately, I can usually make an acerbic remark that will – hopefully – make them realise their comments are not acceptable.
We love hearing from our supporters, and we are keen to share more stories and experiences from our membership community. If you have a story to share, please get in touch by emailing YourAutismMag@nas.org.uk
