Your Autism Magazine - Summer 2018

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 52 – NO 2 • SUMMER 2018

Holidays

Top tips and readers’ advice

MANAGING ANXIETY...

MICHAEL MORPURGO

Read our interview

when plans change

“You become a warrior” Natasha on fighting for her three autistic sons

Summer 2018 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

18

22

WRITERS Hermione Cameron, Madeleine Inskeep and Sara Howell THE NATIONAL AUTISTIC SOCIETY HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@ jamespembrokemedia.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society To join, visit www.autism.org.uk/magazine CONTACT Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Media www.jamespembroke media.co.uk PRINT CPUK print publishing www.cp-uk.co.uk The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine Summer Vol 52, No 2 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of The National Autistic Society. In the interest of providing the widest possible range of information to readers, we may include details of some of the many approaches to autism now available. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that our charity endorses or supports the groups 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.

28

H

olidays are, by their nature, a break from everyday routine. But what if you don’t like changes to your routine? Or you’re a parent who desperately needs a break but worry that the person you care for won’t cope in a new place?

In this issue, three readers give their top holiday tips, and we set out the support you can ask for at the airport.

For holiday reading, how about Michael Morpurgo’s Flamingo Boy, his first book with an autistic main character? Read our interview with the legendary children’s author and hear how ‘Lorenzo’ was inspired by his autistic grandson.

Last, but certainly not least, we would like to say a huge thank you to everyone who took part in World Autism Awareness Week. We were truly humbled by how much you did to fundraise and increase understanding of autism.

Suzanne Westbury EDITOR

Visit our Facebook page www.facebook.com/ NationalAutisticSociety

Contents 04 News 11 Research in focus 13 Professional Awards special 15 Readers to the rescue 16 How do I… cope with exam stress 18 Feature: Your holiday tips 22 Interview: Michael Morpurgo 24 Interview: Robyn Steward on building self-esteem 28 My story: Natasha’s family 32 Advice: managing anxiety 36 My story: Fiona’s family 41 Meet our team: Petrina, Student Mentor 43 Reviews 46 I’m a… basketball player

PAGE

24 3

News

A round-up of the stories that affect you

PIP CHANGES UPDATE

Our new film, Diverted, gets over a million views Year three of our Too Much Information campaign saw the launch of our new short film, Diverted, on 26 March. Since then, the film has been seen more than a million times.

Diverted is set on a train and shows an autistic adult struggling to cope with an unexpected change. It stars drama school graduate and autistic adult Saskia Lupin.

Head of Campaigns, Tom Purser, said, “Thousands of autistic people who responded to our survey told us that the public do not understand autism. And whilst our latest survey told us that 96% of autistic people experience anxiety with unexpected changes, we know that this is still something that the public do not understand.

4

SUMMER 2018

“Our focus group with autistic adults showed there are crucial details that we needed to bring out in our film. The stares, the crowds, the overwhelming nature of unexpected changes – these were the things the autistic people we spoke to wanted to be shown.

“Getting everyone to understand autism better is the work of a generation, not just one film or a couple of years. But we are making progress and we will keep going until autistic people and family members tell us that public understanding isn’t a barrier any more to going out and doing what they want to do.”

See the film and read our tips to help autistic people on public transport at www.autism.org.uk/ tmi/top-tips.

THE PROCESS FOR getting Personal Independence Payment (PIP) is far too stressful and complicated for autistic people and their families. And too many people are losing out on financial support they desperately need.

We want to change that, so earlier this year, we were part of a court case, which confirmed that the rules for the mobility part of PIP had been discriminatory.

The Government has announced that it will review PIP applications, to find out who might have missed out on being awarded the benefit when they should have been. We have heard from a lot of autistic people and their families who wanted more information about this, and if they needed to do anything.

Following our enquiries, the Government has confirmed that no one’s PIP will be reduced as part of this review. We have put this, and other information, on our website at www.autism.org.uk/ PIP-mobility.

The Department of Work and Pensions will be writing to everyone affected by the change

SUMMER 2018 • NEWS

Braving the cold on a long-distance hike

NEW FACEBOOK GROUP Do you use Facebook? If so, we will soon be launching a new members only Facebook group! The group has been set up for you to chat and share advice and tips with other members. We’ll be emailing you with details about how you can join during the summer.

JAMES WOULD WALK 500 MILES… James Bryan is autistic and mostly non-verbal. He also has Coeliac disease and epilepsy. None of this stops him pursuing his passion for hiking.

James’ support worker, Dave Goodall says, “He isn’t interested in much of day-to-day life but what he does love and quite frankly excels at is longdistance walking.

“James has always loved hiking and when a group of staff at his home taught him to camp, his horizons opened up. He has since tackled The Pennine Way, Coast to Coast and Camino de Santiago (500 miles across Spain) to name a few, funding the trips

himself and raising over £5,000 for the National Autistic Society.

“In the process James has inspired many people, other people at his home and members of the public. Our group always increases en route as people seem attracted to his never-give-up attitude.

He received standing ovations of spontaneous applause as we walked through towns in Spain as news spread.”

For James’ 50th birthday next year, Dave wants to surprise him with a trek to Everest Base Camp.

Read James’ six favourite walks on pages 43 and 45.

25 YEARS OF ASPERGER UNITED Our Asperger United magazine is celebrating its 25th anniversary. Uniquely written and edited by autistic people for autistic people, see our animated anniversary film and read the latest issue at www.autism.org.uk/AUonline.

TELL THE CQC ABOUT YOUR CARE Have you had a good or bad experience of a social care or health service in England, like a GP surgery or hospital or support from your local council? If you think the regulator needs to know what happened to you, go to www.cqc.org.uk/shareyour-experience.

On 19 April, research into the history of autism was published in Molecular Autism. It focuses on Hans Asperger, who Asperger syndrome is named after, and explores his relationship with the Nazi regime. These findings have sparked a big conversation among autistic people. We will be listening closely so we can continue to ensure the language we use to describe autism reflects the preferences of autistic people and their families. www.autism.org.uk/Hans-Asperger.

YOUR AUTISM MAGAZINE

5

NEWS • SUMMER 2018

More autistic people should be able to qualify for a blue badge

James displays his artwork

TALENTED TEENAGE ARTIST RECYCLES HIS WAY TO SUCCESS

What next for the Blue Badge rules?

The Government has put forward ideas about changing the regulations that decide who can get a Blue Badge. The changes would mean that more autistic people would be able to qualify.

Our charity has been campaigning for this change for several years and we are pleased that at last the Government has recognised that the system was denying Blue Badges to many autistic people who should have been eligible.

But these are just proposals at the moment. The Government ran a public consultation and we asked you to take part. If you did, thank you. We also responded, saying that the changes should be made as soon as possible.

Now we have to wait for the Government to look at all the responses and decide what to do.

When we have more information about the changes we will put it on our website, in the news section.

James Owen Thomas, 17, is autistic and creates eyecatching artwork with used scratch cards. His exhibition, Much more than meets the eye, has already been shown at Ripon Cathedral, and from May to July, will move to the Bradford Industrial Museum. From late July to September, it will be at the National Coal Mining Museum near Wakefield.

James told us, “I like the excitement of having my art displayed in different settings.

I talk to visitors and they sometimes ask me how I paint my pictures. It’s funny to see their expressions when I explain they are collages made from discarded scratch cards.

“At school there were difficulties because of my autism but my interest in art helped me cope.”

See more of James’ artwork at www.autism.org.uk/digitalYAM.

Cross Party Autism Group discusses Wales Autism Bill The Cross Party Autism Group recently met in the National Assembly for Wales, bringing together autistic people, their families, friends and carers with professionals and Assembly Members, to discuss services and support available in Wales.

The group had an update from Paul Davies AM, who is bringing forward a backbench Bill to protect and promote the rights of autistic people in Wales. Following a recent consultation, the Autism (Wales) Bill will be introduced in the coming months.

There was also a presentation

from Carers Wales as well as details of an upcoming art exhibition, celebrating autistic artists, and a theatre production focusing on autism.

Email CPAGWales@nas.org.uk for more information.

The Inge Wakehurst Trust, which provided start-up grants to Research Autism and our charity’s training services, is sadly closing after 40 years. The Trust was set up to provide high quality autism training to teachers and other professionals. Alan Gardner has designed a garden at our Somerset Court in memory of the Trust. Read about its history and achievements at www.autism.org.uk/digitalYAM.

6

Founding trustees Lord Wakehurst, Michael Baron MBE and Alan Cheyney OBE with secretary Morna Regan SUMMER 2018

NEWS • SUMMER 2018

Special discount for members – The Autism Show 2018 The Autism Show returns this June! Visit on 15-16 June in London, 22-23 June in Birmingham, or 29-30 June in Manchester for inspiring talks and practical advice.

Speakers include Lorraine Peterson (Education Consultant and SEN specialist), who will present on best practice for the true inclusion of autistic pupils. Dr Olga Bogdashina (Co-founder at the International Autism Institute) will talk about how sensory difficulties can affect behaviour and how to help. Autistic actor Travis Smith, who plays Mark Berwick in The A Word, will discuss his personal experience of autism and overcoming everyday challenges.

Talks will also cover self-injury, improving sensory processing, how to find the right school, the barriers to employment and developing early language and communication skills.

Visitors wanting personalised

DIARY DATES We’ve got a busy few months coming up, so add these events to your calendars!

SEP

9

Great North Run, Newcastle www.autism.org.uk/GNR

8

SUMMER 2018

advice can book, onsite, a free 30 minute session with a clinician or adviser in a One to One Clinic.

Subjects covered include managing challenging behaviour, independent advice on special educational needs, speech and language and occupational therapy.

You can buy your tickets at autismshow.co.uk. Our members receive 20% off, just quote discount code NAS8 when booking.

JUN

6

JUN

30

Over 100 hours of talks, plus specialist products and services

AUG

12

Supper club with Gizzi Erskine www.autism.org.uk/ supperclub

Treasure Hunt, London www.autism.org.uk/ treasurehuntwalk

Ben Nevis trek www.autism.org.uk/ bennevis

SEP

OCT

OCT

29

6-12

All Aboard for Autism, Drayton Manor Theme Park, Tamworth www.autism.org.uk/allaboard

Autism Hour www.autism.org.uk/ autismhour

14

Royal Parks Half Marathon, London www.autism.org.uk/ royalparks

Research in focus

Bringing you news of the latest research into life and work on the autism spectrum

Parent training as a means of reducing anxiety in autistic children Dr Fiona McCaffrey and Dr Rachel Ferguson from the Middletown Centre for Autism in Northern Ireland discuss their study exploring the effectiveness of parental training as a method of support in reducing anxiety in autistic children.

Anxiety is estimated to affect at least 40% of autistic individuals and is a prevalent problem for autistic children and young people. The difficulty facing parents and professionals alike is that demand for support with anxiety tends to outweigh specialist provision (the National Autistic Society, 2010).

Working in partnership with the University of Reading, the Middletown Centre for Autism delivered a series of five workshops for parents focusing on evidence-based strategies to reduce anxiety.

The workshops included an introduction to anxiety; action such as helping children to identify emotions and levels of distress/anxiety; sensory issues; strategies for managing anxieties; and using elements of cognitive behavioural therapy and de-sensitisation therapy to reduce the anxiety associated with ‘triggers’.

Eight of the ten parents who attended the sessions had received no anxiety training prior to the study.

The parental training workshops had a positive impact in reducing anxiety for the young people; 60% of the parents reported a decrease in their child’s level of uncertainty related to anxiety; and increased adaptive and social behaviours for 80% of the children.

Anxiety affects at least 40% of autistic people

A marked reduction in ‘challenging behaviours’ was evident for 40% of the children.

Results suggest that the young people were empowered to recognise and manage their anxiety. Additionally, all the parents reported increased knowledge of, and understanding in applying appropriate strategies, and they would recommend the training to others.

“I feel much more empowered. As a parent you are seeing what is causing his anxiety. I’m now taking control of the situation and am not dependent on teachers or other experts.” ● Read more at http://network.autism. org.uk/good-practice/evidence-base/ reducing-anxiety-autistic-children-andyoung-people.

Technology is effective in helping autistic people be independent

Use of technology to support selfmanagement A systematic review of 12 studies on the use of technology such as smartphones, tablets, alarms and watches to help autistic people do tasks themselves without prompting from a parent or teacher (selfmanagement) has shown that this technology is effective for young people aged 5-17 in school settings.

Published in the Australian Review Journal of Autism and Developmental Disorders, the authors conclude that overall, the use of technology to support self-management in autistic individuals is a promising area and deserves further investigation to promote independence and provide support for autistic people throughout their lives.

Read more at bit.ly/selfmanagement-autism.

YOUR AUTISM MAGAZINE

11

PROFESSIONALS AWARDS • FEATURE

The award ceremony honoured outstanding autism professionals

Awards special

Congratulations to our 2018 Autism Professionals Award winners. Read about two inspirational professionals here and see the full list of winners.

T

he attitudes and skills of individual professionals – teachers, social workers, care workers and health professionals – can make such a difference to autistic people and families’ lives. Our Professionals Awards, celebrated this year in March in Harrogate, aim to inspire more professionals – by sharing good practice and rewarding people who go the extra mile to transform people’s lives. ●

Outstanding Achievement by an Individual on the Autism Spectrum Laura James is an author and journalist who has campaigned and written widely about autism, including in her memoir Odd Girl Out.

Inspirational Education Provision for Higher and Further Education The Student Wellbeing Team at the University of Lincoln run a summer school to help prepare autistic students for university life. One student said, “I feel completely different about joining university now; I am not anxious at all and can’t wait to return in September.”

THE WINNERS INDIVIDUAL AWARDS Axcis Award for Achievement by an Individual Education Professional Adele Beeson, Spectrum First Ltd

Inspirational Education Provision - Higher and Further Education Student Wellbeing Team, the University of Lincoln

Lifetime Achievement Award Dame Stephanie Shirley

Inspirational Education Provision - Other Education Providers IMPACT, Gloucestershire County Council

Outstanding Achievement by an Individual on the Autism Spectrum Laura James, author and journalist

Outstanding Adult Services Alpha 1 Supported Living Unit - HM Prison and Young Offenders’ Institution Parc

Most Inspirational Volunteer Mandy Garford, Dartford and Gravesham Branch of The National Autistic Society

Outstanding Health Services Axia ASD Ltd

Outstanding Healthcare Professional Penelope Clarke, NHS Shetland Most Inspirational Social Care Professional Carolyn Tucker, Surrey Choices TEAM AWARDS Inspirational Education Provision - Schools Ashley High School, Cheshire

Outstanding Family Support KAT Family Support, The Kent Autistic Trust Most Supportive Employer EmployAbility at Cadent Most Creative Community Project Aukestra - Aukestral Creative Solutions Autism Accreditation Excellence Award Roman Fields School, Hertfordshire

Want to nominate an inspirational teacher, care worker, health professional or individual for next year’s awards? Go to www.autism professionalsawards.org.uk to find out how.

YOUR AUTISM MAGAZINE

13

Readers to the rescue!

DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE FROM THE AUTISM COMMUNITY.

For expert advice and information

Co, was a great workbook my daughter used.

– Jo

on any autismrelated issues, call our Autism Helpline on

0808 800 4104

Talk to your child about their strengths and things they struggle with WE RECENTLY HAD an Asperger syndrome diagnosis for my four year old. He starts school in September and I am wondering how and when we should tell him properly about his autism. Has anyone any suggestions they can share?

– Anon via our online community I ASKED MY 10-year-old daughter, Kiri, who has recently been diagnosed with Asperger syndrome, what advice she would give. She wrote: ‘’I think you should tell your child about a week before school starts. Contact the teachers so they know.

Walk with them to school and go into the classroom with them so they feel safe.

If it feels they don’t really need you, just say you’ll see them later and to have fun.”

– Susan and Kiri

MY DAUGHTER WAS diagnosed at four, but there was never any big reveal. Like anyone, she has things she is good at and things she struggles with, so we’ve talked to her about what she found difficult and specifically what she found easy and fun – the positives. For example, my daughter was, at that age, amazing at recognising cars, and she has many other strengths that we continue to talk to her about. Also, there are many books for both parents and children to refer to. When my worries get too big by Kari Dunn Barton, published by Autism Asperger Publishing

I WOULD SUGGEST that you let your son settle into school for a couple of weeks as transitions can be challenging to children with an ASD. Ask his teacher when they are going to teach topics like “All about me”, as this is the point where children start to discuss how they are similar or different to other children.

Ideally, you could have a discussion with your son about his diagnosis just before this topic is introduced at school. I would recommend buying a child-specific book like My autism book, by Gloria Dura-Vila and Tamar Levi.

You could guide him through the book and the book’s tick list, which will enable him to identify his strengths and differences.

Then, if he is happy to do so, the tick list can be shared with his teacher.

It is important that he is given ownership of this and understands from an early age that his feelings will be respected.

– Judith

Help me next!

Can anyone advise me how to request flexible working?

I am applying to go from full time to three days a week. Should I fill in a flexible working form or make a reasonable adjustments request? Not sure where I stand with this, as my employer says autism doesn’t fall under the Equality Act. - Anon via our online community SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of Chris Packham’s Fingers in the sparkle jar.

Post your problems or answers on Facebook The National Autistic Society, email YourAutismMag@nas.org.uk, or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London, EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your contribution to be published. We reserve the right to edit submissions. Our Online Community is our discussion forum for autistic people and their families. It’s free to join and a great way to share support. Visit http://community.autism.org.uk.

*Judith wins a copy of A practical guide to happiness in children and teens on the autism spectrum.

YOUR AUTISM MAGAZINE

15

How do I...

reduce exam stress

Autistic people can rely on structure and routine to cope in an unpredictable world. Exams may increase anxiety because they are a new and unpredictable experience that means a change in routine. Carla Manini Rowden, Education Rights and Lifelong Learning Services Manager, sets out five steps to reduce exam stress.

1

Communication and preparation

It helps to explain to the student when exams will take place, how to prepare for them and exam day procedures.

You may find using visual supports can help with this.

Autistic people can take things literally, and may not understand open-ended questions. Schools have a role to play in preparing students for exams, particularly those who may struggle to understand the wording of questions or take them literally. Additional support could be put in place by schools and reinforced at home to help pupils acquire the necessary skills.

Use visual supports to prepare for exam day

16

SUMMER 2018

Revision timetables give structure to study leave

2

Find your learning style

Autistic students will have different learning styles so it’s important that they think about what works best for them when planning revision.

Encourage them to think about what makes them feel most comfortable and able to absorb information. This could include: their ideal time of day to study; what environment they function best in; whether to study alone or with a friend; which strategies can help (eg visual supports, memory aids, relaxation techniques).

There are many ways to study for exams, including revision clubs, school libraries, practice exam papers, revision guides and software for computers and tablets. Some students find that mind maps or flashcards help with their revision or they may prefer to use study apps such as BBC Bitesize (www.bbc.co.uk/education) or MyStudyLife (https://www. mystudylife.com).

3

Revision and study leave

Autistic people may find revision time or study leave difficult as it is unstructured, so they may need help to plan their time according to their learning style.

Creating a revision timetable can provide structure and help them to prioritise which subjects to revise and when. You can use online tools to build a revision timetable, such as the GoConqr calendar (https://www.goconqr.com).

It’s important to include time for exercise, relaxation, meals and drinks in a revision timetable, as these can help students to remain positive and relieve anxiety.

HOW DO I? • FEATURE

4

Getting support from others

Once students have decided their courses, teachers could: • write a weekly study plan to give to students at the start of the course • create a timetable showing when exams are taking place and keep it on display • talk about how you’ll be preparing for exams at school, for example revision lessons • use practice or past papers to work on their exam technique • help their understanding of openended questions and figurative language • use a short story to explain what happens during exams • try to see students at the start of each exam, as seeing a familiar face may help.

At home, parents can help their child with exam preparation by: • trying to teach your child simple relaxation techniques • asking teachers to remind your child to use these techniques before exams • suggesting to your child that they do whatever helps them relax before leaving for an exam, this could be listening to music or other forms of sensory input • encourage your child to take part in physical activity as this can reduce anxiety • if you can, make sure your child eats well before an exam • make yourself available to offer support during exam times.

• display your child’s exam timetable somewhere visible • consider writing your child a social story about exams.

Extra time, a scribe and supervised rest breaks may be offered

5

Special arrangements and reasonable adjustments

The Equality Act 2010 (Disability Discrimination Act 1995 in Northern Ireland) makes it unlawful for responsible bodies, eg schools and authorities, to discriminate against disabled pupils and students. Unlawful discrimination includes a failure to make reasonable adjustments for disabled pupils or students to allow them to fully participate in their education, including exams.

Schools can make their own arrangements for autistic students during internal exams. For public or external national exams, they must apply for special arrangements to be put in place. These can also be called access or assessment arrangements and may include:

• extra time • a separate room either in a small

group or alone • a reader • a scribe • a prompter to keep students focused • an oral language modifier • a computer instead of handwriting • assistive software (screen reader/

voice recognition) • exam papers in different formats,

such as digital • supervised rest breaks.

These arrangements may be offered to students with special educational needs or additional support needs, including autism. They must be requested in advance from exam boards or awarding bodies and there are often deadlines involved.

Useful resources

• Our Education Rights Service can provide information, support and advice on educational provision and entitlements for children and young people on the autism spectrum. Telephone 0808 800 4102 (free from landlines and most mobiles) or visit www.autism.org.uk/educationrights.

YOUR AUTISM MAGAZINE

17

FEATURE • TRAVEL

Your

travel tips Going away this summer? Three readers advise how to prepare for the journey and where they go. On page 20, Michael Connelly sets out what you can ask for if travelling from Bristol or Birmingham airport.

Ben Gooding on preparing for the journey “Our son Zak is five and was diagnosed with autism just before his third birthday. Zak is nonverbal and very anxious in new situations, so planning a holiday abroad was a massive task.

Planning such a long trip was a worry from the start, from how busy and overwhelming the airport would be, to getting through customs, to then a nine-hour flight. And that was just day one.

While seeing if this voyage would be feasible, we looked online for ways to help plan and prepare Zak

18

SUMMER 2018

for a trip. I came across an article on Virgin Atlantic’s base that explained how a visit to their mock up planes could benefit people with ASD in preparing for a flight. I contacted Virgin’s special assistance team and arranged for Zak to visit their base to familiarise himself with the surroundings of a plane. We truly feel that when the day of the flight arrived, this supported Zak in coping with the journey.

We have to praise Virgin and Gatwick airport for their assistance in helping the trip be a successful one.

On arrival to the airport, Virgin sent us to Gatwick guest services where we received their hidden disability lanyard. This lanyard is identified by staff to help travellers with disabilities in a discreet manner. After check in, we were guided through family customs, it was a lot quieter and quicker and helped prevent Zak’s

The family watched vlogs to prepare

“We visited Virgin Atlantic’s base to familiarise Zak with a plane.” anxiety escalating. On arrival at our gate, Virgin boarding staff let us board early to avoid a rush and help us get Zak into his seat and settled before the plane became busy. This was also available on our return flight.

To help Zak prepare for his experiences whilst on the holiday, we spent time watching vlogs on YouTube.

Being that we were going to Disney, we came across Hayes family vlogs, Tim Tracker and the Disney vacation planning video which all helped. We also printed pictures of our holiday accommodation so it was somewhat familiar to him when we arrived. The trip was such a success that we are planning a return trip this year. After experiencing it first-hand, we have decided to create our own YouTube channel: Adventures with Zak.

Zach’s family have gone to East Dene on the Isle of Wight for the last 10 years

TRAVEL • FEATURE

Emma Saysell on her family’s favourite destination “Our son Zach is 20. He has autism and is non-verbal, with complex needs and sometimes displays challenging behaviour.

For the past 10 years we have gone to Freedom Family Holidays run by Joseph Allnatt Centres.

The centre is called East Dene and is on the Isle of Wight. East Dene offers an all-inclusive holiday for those who have a family member who has autism or an associated diagnosis. There is a wonderful staff team who run a programme of activities over the week. The kitchen staff are extremely accommodating to individual needs and preferences.

The site is in a lovely position, giving views of the coastal path and the sea which are at the end of a massive garden; the garden includes woodland and a heated outdoor pool. The beach is a few minutes’ walk away.

The Isle of Wight is ideal for walking and outdoor pursuits, there are many beautiful beaches and places to visit.

I would thoroughly recommend this for any family who are looking for a break. Nobody judges anybody else, there is much support for one another and firm friendships are made.”

“Nobody judges anybody else, there is much support for one another and firm friendships are made.”

Michelle Myers on holiday realism “Holidays... well, what can I say?

From complaints on a plane about my son Owen’s wriggling, to tripping over tent pegs trying to prevent our tent from blowing away in a storm-force gale, we’ve had some right humdingers over the years.

You name it, we have tried it all in our quest to have that perfect family holiday.

But, for us, there has been no such thing. We spent year after year chasing that happy family image that everyone else seemed to be sharing on Facebook. “Why didn’t our holidays look like that?” I would torture myself and feel resentment for what we didn’t have.

But although we may not have had those selfies by the pool, what we did have as a family was special and amazing (and a little out of the box at times) so we just had to learn to embrace it.

Here’s what I have learnt through trial and error these past 16 years holidaying with my kids…

• Most airports offer fast track wristbands that can be a real help

“We find that taking his own pillow and covers can help him settle at night.”

as they reduce queuing times and they can often provide visuals too. (Contact your local airport for details.)

• If staying in the UK, we keep within a certain radius of how long our son can manage in the car. Currently it’s a three-hour drive. We talk through the route with him, plan out stops and make sure he’s stocked up

YOUR AUTISM MAGAZINE

19

FEATURE • TRAVEL

Bristol airport has achieved our Autism Friendly Award with food and plenty of battery power.

• Once there, we find that a day in/ day out has worked well. We can underestimate how tough it can be in a new environment and for my son he often needs a day to settle after each activity, as it helps him regulate.

• We find that taking his own pillow and covers can help him settle at night. We have even been known to take his pet tortoise as a stowaway (whatever works, I say.)

• My daughters can find things hard at times, so I try to do fun activities with them over the holiday. It could be nipping out for an ice-cream or a quick game of bowling down at the arcade. These small things can help them adjust to their unique family life and not feel too left out.

• There are organisations that help with financing holidays (because, let’s face it, we don’t get paid a lot as full-time carers, do we?) And there are also places out there that provide specialist holiday accommodation for families like ours. There is plenty of information on the NAS website.

• Now this is a biggie – don’t be afraid of what others think. Do what works for you. Nobody has the right to judge your choices!

• And finally, be realistic. No family is perfect, people argue, get cranky and sometimes we can feel it’s all just too much. We’re not used to being with each other 24 hours a day. So, do whatever works for you and your family and don’t ever feel guilty because you’re human, we all have good days and bad days!”

At the airport…

Michael Connelly, Regional Training and Standards Manager at OCS Group, which runs the facilities at airports, explains the support for autistic people available at Birmingham and Bristol airports.

OCS have been working with several UK airports to help them to become autism-friendly.

We now have two airports, Birmingham and Bristol, that have achieved the National Autistic Society’s Autism Friendly Award, thanks to the efforts of all staff involved.

This has involved training many of the airport staff in hidden disability awareness, helping them to better identify the needs of passengers travelling through their airport.

Both Birmingham and Bristol airports are updating their websites to make them fully accessible with all the relevant information that autistic passengers will need. For example, Birmingham has the UK’s first autism assistance video of its kind on its website, with two downloadable booklets, one for children, and one for parents and carers.

Both airports are also using the hidden disability lanyards and cards, which OCS introduced as a new initiative in 2016. These can be collected from the helpdesks where they may ask you for your email address so they can get some feedback on your journey.

Find out more

To support our passengers using the lanyard scheme, we have worked closely with both the National Autistic Society and Autism West Midlands to give our staff the best training so that they can assist passengers better.

This includes giving better, clearer explanations about what they would like the passenger to do, allowing passengers time to process, having a little understanding and patience, and remembering that not everyone has flown before and may need stepby-step directions on what to do and when to do it.

Our security teams and immigration staff have had similar training, enabling them to be more helpful and understanding of passengers’ needs.

For more information, visit the special assistance page of your airport website or make enquiries at #OCS_Assist.

Birmingham, Bristol, Edinburgh and Gatwick airports all have our Autism Friendly Award.

• Read more advice on planning for holidays and travel at www.autism.org.uk/about/family-life/holidays-trips/preparation.

• Find out who holds our Autism Friendly Award at www.autism.org.uk/afa.

20

SUMMER 2018

INTERVIEW • MICHAEL MORPURGO

Author of more than 130 children’s books

“I have a very strong personal

connection to autism” Michael Morpurgo’s latest book, Flamingo Boy, has an autistic main character.

He tells us who inspired him and how the Second World War story developed.

Why did you decide to feature an autistic character in Flamingo Boy? I have a grandson, Lorens, who is autistic and have watched his growth and development with deep interest.

I wanted very much to see if I could write about how he sees the world and how other people see him.

How is the character of Lorenzo similar to your grandson?

I think he’s very similar. I was concerned not to write about autism as it’s often been written about before.

So often, autism is connected with some kind of genius and indeed it is true many autistic children have extraordinary talents which sadly can lay dormant for their lifetime, if not encouraged. But not all autistic children are like that, and in my story I have a child who has a talent for trust and affection. I also wanted to write not just about an autistic child but how autistic people grow up from childhood and can belong to the world of adults. That seems to me to be very important.

What other autism research did you do before writing the book?

Very little, I did not want it to become a story about a condition but about a person. I’m not an expert in autism, and reading a few books wouldn’t have changed that. What I have is a very strong connection, a personal connection.

Above all, Lorenzo is an extremely kind person. He is Kezia’s only friend and heals injured flamingos. We get a real sense of him as a person, who is different but is part of his

22

SUMMER 2018

community. Was this what you hoped to achieve?

Yes, exactly.

Lorenzo does sometimes get agitated and has little sense of danger but this is not the main focus of his character. Was it difficult to get the balance right?

No, because I knew Lorens. Being part of Lorens’ life for many years, I have witnessed how he is, what upsets him, what calms him but because of his family this is never allowed to overwhelm him.

Another of the book’s themes is people not being what they seem.

Lorenzo is always surprising the reader with how much he understands, even if he doesn’t verbalise it. Was this a key theme?

Very much so. Lorenzo has a strong sense of the people about him, their affection or their hostility, and that sense extends to the protection of those he loves, whether it be family or flamingo.

Lorenzo communicates using parts of words such as “flam” for

Competition!

flamingo. It’s a welcome portrayal, as autistic people are often depicted as either verbal or non-verbal. What inspired this?

My observation of my grandson, he has a vocab all of his own which is sometimes hard to comprehend but it’s very expressive. He loves to be listened to and to communicate as we all do.

Do you hope that by including an autistic character, children will develop a better understanding of autism and their autistic classmates?

Not just children. I think the more we respect the differences of others and come to understand their differences, the more connection we can make with them and them with us. Books have an important part to play in enabling us to empathise with others.

This is not a book that seeks to do that deliberately but I hope it does.

How have people responded to the book so far?

The book is only just out. I do know in my own family, those who know Lorens well think highly of it and that matters to me more than anything. ●

• Flamingo Boy is the story of Lorenzo and his friend Kezia, a Roma girl. It is set in the Camargue in France during World War Two. There are lots of things Lorenzo doesn’t understand – but he does know how to heal animals, especially flamingos. When the German soldiers come, everything is threatened…

• We have two copies of Flamingo Boy to give away to members. To enter, send your name to YourAutismMag@nas.org.uk by 30 June.

“In my story, I have an autistic child who has a talent for trust and affection.”

YOUR AUTISM MAGAZINE

23

INTERVIEW • ROBYN STEWARD

“One key to self-esteem is choosing what sort of person you want to be. I’m a trumpet playing human so I want to better my trumpet playing.”

Strategies to increase

self-esteem

We asked trainer, author and musician Robyn Steward for her tips on improving your self-esteem.

R

obyn Steward is autistic and helps people to better understand autism. She trains local authorities, care and support providers, schools and parent groups, showing how many different experiences of autism there are. She also speaks at school assemblies and runs workshops for young people, and has written The independent woman’s handbook for super safe living on the autistic spectrum. As an ambassador for our charity, she has spoken at several of our conferences, most recently on practical strategies to increase selfesteem in young people – we asked her more about this important topic and her own experiences.

You go into schools to talk to autistic pupils, and provide workshops.

While it’s difficult to generalise, what issues do young people on the autism spectrum commonly talk about?

Many young people on the spectrum can feel alone in their school years as

24

SUMMER 2018

“Sometimes I am the first autistic adult they have met and that alone is really powerful.” they may have intense interests that are not so intense in their peers.

Sometimes I am the first autistic adult the pupils have met and that alone is really powerful. I think there is often a kinship amongst people on the spectrum. Most autistic people I have met have been bullied or feel excluded from society in some way. It’s very powerful when a young person meets someone who has been there and done that and can talk about it in frank and honest terms. I am not putting on a front and I tell it how it is.

I worked with someone with learning disabilities who wanted a job that would require a degree. However, in their late teens they were still struggling with GCSE English and Maths. I asked them why they wanted to apply, explained that the route into that particular role would involve a degree, but that there are other ways of meeting the job requirements. They thanked me for keeping it real and acknowledged they had been fobbed off by other professionals who just didn’t want to hurt their feelings.

Social skills classes help if they

are based in reality. For example, when you get called names at school, people advise you to walk away or tell a teacher, but ask a typical class of young people if this works and they’ll tell you ‘No’. Programmes like PEERS have developed materials to help autistic people. So, for example, saying “whatever” in the right tone doesn’t give the bully anything to work with, so they stop.

Young people just want to be listened to in a way that is meaningful to them. This might not be through eye contact. You need to ask the person.

Teaching young autistic people to be proud of who they are is important.

Because the world is set up by nonautistic people, it can seem that autistic people’s skills are less valuable. This is only because of the context you are viewing them in. Just telling an autistic person that non-autistic people value eye contact is a bad message when you can give them something so positive so easily with a little bit of creative thought, starting from what they have, not what they don’t have.

Robyn says it’s vital to learn skills to cope in social situations

Photo: © Jesse Coleman www.jessecoleman.com

INTERVIEW • ROBYN STEWARD

Why might their self-esteem be low?

Very often people who have masking skills find socialising exhausting and often don’t get time to reset before the next onslaught of social expectations.

This can result in a child coming home from school, having behaved perfectly all day, and having a massive meltdown because they’ve held it in.

From personal experience, meltdowns can cause unusual behaviour: this is not a choice − you are kind of on autopilot.

Structured social activities at break times can help, as can managing sensory issues.

Bullying lowers self-esteem because in the microcosm of school, you assume everyone is against you; that the bullies are personally picking on you when in fact you are perhaps an easy target. If you think of insults on a scale of 1 to 10 (10 being the most offensive), they are just picking the number that gets a reaction.

Often autistic people have cooccurring conditions such as dyspraxia, which might affect their learning. When I look back to my own schooling, it annoys me how much time the school wasted. I need to have my learning modified because my working memory is limited. I forget things quickly but once they are in my long-term memory they stick. You’re bound to have your self-esteem crushed if you spend your school life feeling like a failure.

It’s vital autistic people learn the skills to cope in social situations. In an ideal world these kinds of things would be 50% of the curriculum.

Do you think this continues into adulthood, with people on the

YOUR AUTISM MAGAZINE

25

INTERVIEW • ROBYN STEWARD

autism spectrum also having low self-esteem?

Yes. I think people often feel devalued and there is a high rate of mental health issues. Suicide is the most common cause of premature death in autistic people without a learning disability.

What can people on the autism spectrum do to build up their selfesteem? What practical steps can they take?

One key to self-esteem is choosing what sort of person you want to be.

I’m a trumpet playing human, so I want to better my trumpet playing.

I value others’ feelings as I think the world is a better place when we consider one another’s experiences.

Breaking what you value into doable measurable daily aims can raise self-esteem as you can see yourself improve each day.

Not trying to not be autistic is important. Try to find people who just accept your autistic self. People understandably want immediate strategies, but self-esteem is built up over time. Heading towards being able to live as yourself and not having to mask your abilities and difficulties is a good goal.

What can parents do to help build their children’s self-esteem?

Educating your child about their autism is important. Explain that while most people are not autistic and the world is often not designed for autistic people, it doesn’t mean there is anything wrong with them.

Allow them to explore their interests but make sure they learn the skills they need to navigate the social world.

I know many autistic people who have degrees but can’t get a job.

Get work experience early on and find people you get along with.

What can teachers do to build up their pupils’ self-esteem?

Work with the child’s learning style and sensory profile as much as possible. Let them know very clearly they are not useless and schools are just hoops to jump through. Life has many more hoops if these ones don’t

26

SUMMER 2018

Robyn advises finding other people who accept your autistic self

“People understandably want immediate strategies, but selfesteem is built up over time.” fit, but for now you just have to keep trying.

You’re a musician – do you think having hobbies and interests that you enjoy, or are good at, is key to building up self-esteem?

I’m rubbish at most aspects of music apart from improvisation − I can create soundscapes and patterns and stories.

When I discovered the more aural focused approach to music, commonly found in jazz, I suddenly flourished.

I learnt that scales were not just unconnected dots. They follow simple rules that, with practice, you can hear − a bit like telling the difference between a door bell and a car engine.

I now run my own monthly night and also appear regularly at a friend’s event “intox” as the in-house trumpet player.

I also got booked to work at the Tate Britain as an in-house roaming musician. I think developing an interest that can earn you money is a good way to go. Autistic people can develop specialised skills that

Find out more

are appreciated by others. This is ultimately what has led to my success, and a willingness to fail.

What were your experiences of school like? What helped you increase your confidence and selfesteem later on?

I had a very miserable school experience from age 11 when I was mainstreamed. I felt useless and like I’d never do anything in life. After leaving school I learnt I wasn’t useless, just different. I work much better when I take in lots of information on a subject. I wrote a book due out later this year on periods (The autism-friendly guide to periods) and learnt the molecular structure of the four hormones involved. After all that learning, I can write it all down onto the page. I can do things as I go along like that.

Once people valued my skills, my self-confidence improved. And when I was younger, my parents brought me up to know I was loved and wanted just the way I am. ●

• More advice on making friends, socialising and telling people you’re autistic can be found at www.autism.org.uk/about/communication/social-adults.

• Read more about Robyn at https://www.robynsteward.com/.

FEATURE • MY STORY

George, Natasha, James, Mike and Ric

My story

Natasha, Michael, James & George Blogger Natasha Lee’s three sons are autistic. She writes about the difficulties of diagnosis, the lack of help as they enter adulthood and why she’s backing an Autism Bill for Wales.

I

’m the mother of three autistic sons. Michael, 20, James, ten and George, five. My three boys are the perfect example of how wide the autism spectrum is as their autism presents very differently in each of them.

Being an ASD parent is isolating.

There’s no sugar coating it as I don’t think it helps others in the same position. From the moment you try to get an assessment you become a warrior going into battle. You are there to fight for your children to get them access to services, the right schools, therapies, colleges and employment opportunities. I don’t know if it’s even possible to take off the warrior armour, but with the eldest being 20, I am still having to fight to get him the support and opportunities that he needs and

James was diagnosed at two

28

SUMMER 2018

deserves as an autistic adult.

Every parent tries to do the best for their child, but for us ASD parents, it’s essential that we have access to the knowledge and support that our children need. Without us, in a society with dwindling financial support for additional learning needs, our kids can become cost saving collateral damage, not the valid and beneficial members of society that they should be recognised as.

DIAGNOSIS I’ve had very a different experience with the diagnostic process for each of my sons. You would think having gone through the process once it would be easier but it wasn’t the case.

For Mike, despite being in a special school, there were issues back then with the diagnosis process. Although we knew that he was autistic, it wasn’t until he was 19 that we had to go through the Adult Mental Health Pathway to get an official diagnosis.

Mike and I felt it would help him in the working world if he had a definitive diagnosis as employers can fear the unknown, whereas they can research autism to understand more. Ideally with changes in the law, employers would have a responsibility to understand autism and therefore know the benefits of hiring an autistic employee.

James was diagnosed at only two years old. He had a number of physical disabilities and was referred

to a paediatrician who picked up on the need for an autism assessment.

I’m so grateful for that as early intervention is key for autistic people and their families. With an early diagnosis, I was able to attend the National Autistic Society’s EarlyBird training to understand more myself, and I fought for one-to-one support at playgroup, which helped going forward to nursery and school. Early intervention and the right support took James from being non-verbal and violent, to now, aged 10, fully accessing the curriculum and being identified as more able and talented.

George, my five-year-old, was our least expected diagnosis. He had hit the key milestones through his first 18 months (something that Mike and James hadn’t) and even though I kept saying that I found him hard, I put it down to having three kids and trying to run my own salon and YouTube channel. After giving George time to settle in his new school, we went to the teachers and asked if they too found him hard and said we were starting to consider autism. They agreed, and that was the easy bit. It was nigh on impossible to get him referred, even with school support.

We had a referral via the nursery nurse to the community paediatrician who was totally dismissive and completely uninterested. School had to help us, with the aid of the school nurse, to find an alternative way to access the referrals, which they did.

MY STORY • FEATURE

“Mike was always crazy about streetlights and dreamed of working for the local council as one of their streetlight engineers.”

George was finally on the waiting list and then assessed. I remember clearly the results of the assessment in June last year, expecting George to be borderline. However, like his older brothers, he had a full autism diagnosis.

What I have learnt over the past 16 years is that accessing a referral for assessment has become harder than ever. No matter how hard you research and fight, it’s like you turn a corner and hit a brick wall. It took a year to get George’s diagnosis, that’s a year of specialist therapy and support lost at a key development stage in a child’s life. This is a massive failing.

What about the parents who don’t have a fantastic school and additional learning needs coordinator who is willing to fight with you for your child?

It would have helped our family to have clear and consistent pathways to getting a diagnosis and professionals who understood our needs. It

shouldn’t be a battle and it shouldn’t take so long.

SCHOOL One of the best sources of support we are lucky enough to have is James and George’s school. Help from professionals who truly understand autism has enabled them to thrive in an environment that suits their needs.

However, I am so fearful of James’ next step to high school next year.

We have access to a high school with an ASD unit attached, but the local council are trying to shut it down as they want to build a joint school with one from another village as there’s a big pot of money available for new schools, but no money to improve existing schools. The current school is small, and friendly, perfect for integrating autistic children. However, there isn’t consistency with autism knowledge and skills between schools, and each school’s approach to autism is different. There needs to be unified

training for the professionals involved to be able to offer exactly the right support both in school, and during transition to high school.

ADULT LIFE Mike is now 20 and we’ve been struck how little support there is for autistic adults. Since he left school at 16, we were literally dropped overnight by departments like Child and Adolescent Mental Health Services (CAMHS). It was down to me and my husband to find college courses that Mike would be able to access, and fight his corner at the college about why we think he could do the course.

Only 16% of autistic adults are employed, and after our experiences, I’m surprised it’s not lower. Every step with college was a fight, and trying to ask around for apprenticeships and traineeships with a vocational approach was met with closed doors.

Mike desperately wanted to work and support himself, but the jobs on

YOUR AUTISM MAGAZINE

29

FEATURE • MY STORY

Mike recently moved into his first home

offer focused on his difficulties, not his strengths, ie, cashier, customer services, telephone work.

It was a phone call from one of his college tutors that changed everything.

He was calling to advise us that Mike didn’t appear to be doing well enough in class to pass and his other subject tutors thought it was best he drop the course. I said that Mike had proved every “professional” wrong with their limited expectations of what he was capable of, and that they judged him based on his social awkwardness and stutter. However, Mike had a passion − streetlights! Mike always dreamed of working for the council as one of their streetlight engineers. I explained this and the tutor suddenly understood why Mike was choosing to do electronics, engineering and welding courses. His tutor looked at alternative ways to get into the job, and last year Mike started a two-year traineeship with the council with a view to a fulltime job at the end.

With his monthly income, Mike wanted more independence, which petrifies my husband and I. However, we agreed to all work together to offer him a supported living arrangement.

In February this year, Mike moved into his first home. It’s been and continues to be exhausting, as there is no help or support in going about any of this. We have had to do everything ourselves, researching, emailing and making calls just to try and help Mike live his best life.

I can say categorically, from our experiences, get what help you can before they leave school as once they

30

SUMMER 2018

“Since Mike left high school at 16, we were literally dropped overnight by departments like CAMHS.” leave those school gates, it’s as if they have fallen off the face of the earth.

There is no help out there. I didn’t think anything could be harder than trying to get a diagnosis and support, but this last four years of Mike’s life have been the most isolating, scary and frustrating, all because of the lack of support, training, inclusion and information.

AN AUTISM BILL FOR WALES This is our time to make a difference as change NEEDS to happen. With a unified system and training across Wales, the process from referral, to diagnosis, to school and adulthood should flow with information, understanding and opportunities.

Find out more:

We shouldn’t feel like David fighting Goliath (although we all know that David won!). With a unified system across all counties, money and time can be saved, there will be no cross county confusions, all areas can offer the same advice, information, opportunity and training to the relevant professionals and carers.

My boys have dreams and aspirations for what they want to do with their lives, and I will do everything I can to help them. This Bill will not only mean that I no longer have to feel like a warrior going into battle at every step, but that every other autistic child in Wales has access to the services and support that they need and deserve. ●

• Get advice on diagnosis at www.autism.org.uk/about/diagnosis.

• Find your nearest EarlyBird training at www.autism.org.uk/earlybird.

• Share your thoughts on the content of the Autism Bill for Wales at www.autism.org.uk/youract.

ADVICE • ANXIETY

Managing anxiety around unexpected changes When plans suddenly change, it can cause panic and stress. Read our strategies on coping.

BY SARA HOWELL, HELPLINE ADVISER

A

nxiety is a mentally and physically exhausting presence for the majority of autistic people, who can be debilitated by its effects. Navigating the social world of unwritten rules and sensitivity to the environment can be a daily challenge, therefore predictability, structure and routine can support those suffering with anxiety to feel happier and calmer.

Unfortunately, sometimes the structure of the day can be disrupted, plans may change, or public transport is late. These moments can induce panic and stress, making it feel as though everything has stopped making sense again. One way to combat these moments is to develop strategies for when we encounter the unexpected; this can be a crucial part of maintaining good mental health.

schedule. You could tell them that if they need to make changes, you would like to be informed as soon as possible, so that you can adapt to the new plans and process why the change is happening. A little patience on their part will help and they should understand that it may take a little bit of time for you to adjust to a new plan, but they should always know you are trying your best. Anxiety is not something you choose to have, or can snap out of.

You could consider carrying an ‘Autism Alert Card’. These are free to members of The National Autistic Society, and give information about autism for when communication may be difficult. The person reading it may then understand why you are feeling overwhelmed and could follow the guidelines of how to support you.

to record information, you could write down scenarios and think of coping strategies. You could use social stories to show you alternative plans. Once you have a ‘coping with change’ plan you could give it to a friend or family member who could agree to talk you through it if you reach crisis point.

You could also keep an anxiety diary to record the situation, how you felt and how you recovered.

What can other people do?

Preparing for change

Tips for regulating yourself

When you are feeling anxious, it can be hard to think logically, therefore a plan for coping with change should be made when you are having a good day. Depending upon how you prefer

When plans change it is understandable to be frustrated. The important thing is to recognise that emotion and know how to respond appropriately. Your personal anxiety diary should help you to understand what strategies help you to selfregulate, however you might find the following activities helpful: • folding up a piece of paper • engaging in your favourite subject • a stress ball or fidget cube

A good starting point can be to ensure that friends, family or other people you make plans with understand how important it is to stick to your

“Tell people that if they need to make changes to plans, you would like to be informed as soon as possible.”

32

SUMMER 2018

Our latest film, Diverted, focuses on the impact of unexpected changes

Listening to music or finding a quiet space to be alone can help

• listening to your favourite music • engaging in a meditation app • take a short walk or find a quiet

space to be alone • look at pictures of a pet • deep breathing exercises, focus on

getting through the stressful moment, knowing it won’t last forever.

Next steps If you are running late, inform the person you are due to meet so they can wait for you.

If your bus is late, you can look for the time of the next bus. If you have a smartphone, you could consider downloading a journey planning app.

This should show you where you are on your journey, and may provide up-to-date information on services, cancellations and timetables.

If you are worried about your mental health, or any physical symptoms from anxiety you should seek advice from your GP or a medical professional.

Useful resources

• Learn more about anxiety at www.autism.org.uk/about/behaviour/anxiety.

• Read about how you can prepare an autistic person for change: www.autism.org.uk/about/behaviour/preparing-for-change.

• Our Online Community is our discussion forum for autistic people and their families. It allows you to share your thoughts and experiences about anxiety and many other topics. It’s free to join: http://community.autism.org.uk/.

• Brain in Hand is an anxiety management app that supports you to develop your own coping strategies, tracks your anxiety levels and has a contact centre for when you may require extra support to manage your anxiety. http://braininhand.co.uk/.

• You can a request a free Autism Alert Card by contacting our Supporter Care team on 0808 800 1050 or emailing membership@nas.org.uk.

In the article about sensory challenges with eating in our Spring 2018 edition, we should have referred to seven senses and not five. We apologise for this error.

YOUR AUTISM MAGAZINE

33

FEATURE • FAMILY FINANCES

Ellie has Asperger syndrome and finds riding therapeutic

Fiona, Guy, Ellie &

Tommy’s story Fiona Roden writes about the financial challenges facing her family and her struggles with the Personal Independence Payment (PIP) system.

M

y name is Fiona Roden and I’m married to Guy. We have two children; Ellie and Tommy.

Ellie is 16 and has Asperger syndrome and Tommy is 12 – he is on the autism spectrum and has ADHD. Both children are at a mainstream secondary school with an ASD unit attached to it.

Tommy receives high rate Disability Living Allowance (DLA) and Ellie was receiving middle rate DLA. When she turned 16 last September, she had to apply for PIP. APPLYING FOR PIP My experience of applying for PIP for Ellie made it feel much more generalised than DLA. The form asks a blanket set of questions; ‘Can you prepare food?’ or ‘Can you eat and drink?’ There is very little space to put in the effects of autism which have so much to do with behaviours and mental health. There are two obvious questions where you can include it: ‘Communicating’ and ‘Mixing with other people’.

Applying for DLA includes similar questions on ‘Washing and bathing’ and ‘Managing toilet needs’ but there

is room to talk about a child’s specific illness or disability and give much more detail on the behaviours and what support is given.

Ellie was turned down for PIP because she didn’t get enough points. She can eat and drink and wash and bathe, etc. You need to get a minimum of eight points to be entitled to standard (lowest) rate PIP and she got two, as the form seemed to only allow her to talk about the effects of her autism in the question ‘Mixing with other people’. There was no obvious place to write about her meltdowns at home. The fact that she struggles to go anywhere on her own, use public transport or talk to anyone official on the phone (such as someone in the bank) wasn’t given enough weight.

I don’t feel I can appeal the decision and I don’t have any extra written evidence available to back up the appeal. Like many autistic girls, she masks her symptoms at school and in the outside world and only presents her negative behaviours at home where it’s safe.

The PIP form needs to help people to give much more information on how their condition affects them mentally. In our experience, the DLA

“The fact that she struggles to go anywhere on her own or use public transport wasn’t given enough weight.”

36

SUMMER 2018

form encourages parents to apply, but the PIP form deters them.

BEFORE AND AFTER Guy gave up work five years ago to support me in bringing up Ellie and Tommy as I couldn’t cope alone with their challenging behaviours. Ellie had frequent meltdowns and Tommy had to be supervised most of the time.

I remember feeling terrified of the future. The only way to keep the family going was to have us both at home and live on benefits. With the children’s DLA came Carer’s Allowance of £250 for both of us and enhanced disability child tax credits of approximately £120 a week. Enough money to survive on.

We were under a lot of strain as a family, especially as both children would wake up throughout the night.

We were totally reliant on each other to keep the family together. I couldn’t stay in despair for too long as each new dawn brought a new beginning.

With Tommy’s ADHD, it is hard for him to control his impulses, much as

FEATURE • FAMILY FINANCES

we try and persuade him that he can!

The money we received sometimes had to pay for new items. For instance, if Tommy was left alone in the bathroom, he would pour bottles of shampoo and shower gel down the sink as he loved the smell of them. He would break toys and occasionally, he would throw things at the walls and make holes in the plaster.

Tommy loves ‘hidden object’ computer games and we allowed him to buy a couple a week as they hold his attention and it gave us a chance to get on with chores. He doesn’t have friends he can go out with, so we would spend money on going out as a family to an indoor play area where he could run around and let off steam.

Ellie enjoys riding. She’s a competent rider and the feeling of succeeding boosts her confidence.

Grooming and being around the horses is like therapy for her and increased her sense of wellbeing.

Now, as well as Ellie losing her

benefit money, my husband has lost his Carer’s Allowance and enhanced disability child tax credits. We are £800 worse off per month.

Sadly, Ellie’s horse riding has had to stop. So she’s lost her escape and chance to do something that lifts her self-esteem. We’ve had to cut right down on going to play areas, which are a lifeline for Tommy. We cannot replace anything that gets damaged at home.

CONSTANT STRUGGLES I am not looking for sympathy but highlighting how difficult life is

YOUR AUTISM MAGAZINE

37

FEATURE • FAMILY FINANCES

Tommy is autistic and has ADHD – letting off steam is crucial

Ellie, Guy, Fiona and Tommy

“Sadly, Ellie’s horse riding has had to stop. So she’s lost her escape and chance to do something that lifts her self-esteem.”

without Ellie’s benefits.

I could try and work again but, under the benefits system, I would actually be worse off working parttime. Added to that, my husband has health issues and Tommy is constantly being excluded from school. I also have health issues; depression and alopecia (total hair loss).

I think the PIP system is unfair and needs government intervention, so it works properly for autistic people.

It’s vital that MPs know how many families are struggling. Talk, write or meet with your local MP to talk about it. This has a massive impact on ordinary families trying to do their best to being up their children and forge a more positive future. ●

Find out more

• Read our advice on applying for PIP at www.autism.org.uk/about/ benefits-care/benefits/pip.

PIP ADVICE When completing the PIP2 ‘How your disability affects you’ form: • Start by looking at the criteria as it relates to autism – see our guide at www.autism.org.uk/PIP. This helps you to understand what information to include.

• Complete the PIP2 form as if the person reading it has never heard of autism. Unfortunately, you cannot assume they will have an understanding.

• Complete the PIP2 form as if the person reading has no previous knowledge of you. They do not generally access the information you may have provided for previous benefit claims.

• Get advice from a welfare rights adviser or a local benefits advice service if possible. Or ask a friend or family member to help with the form.

• Provide as much detail and as many examples as you can. For each question there are tick boxes and then a bigger box for ‘extra information’; if you do have difficulty or need help with an activity, it is important to explain what difficulty you have and help you need in the extra information box.

• If you have any reports, assessments or other paperwork that you think will help them understand your difficulties, send copies in with the PIP2 form.

New information is stronger, but send in older information if still relevant.

After you return the PIP2 form, they will, in most cases, ask you to attend a face-to-face assessment, either at an assessment centre or in your home. In theory, this should be the time to go into more detail about your or your children’s needs. If your request for PIP is turned

down, it is a good idea to ask for a ‘mandatory reconsideration’ – this is where the DWP look at it again. Then, if that isn’t successful, you can appeal.

Although you might need to find some other evidence, this doesn’t have to be existing evidence. You could go to your GP or another professional to ask for evidence. Things like diagnosis reports and education, health and care plans can also be submitted. The guidance at https://www.advicenow.org.uk/ guides/how-win-pip-appeal is very useful – as is our website.

The reality of the current system is that too many people only get PIP when they do appeal – that is something we have raised with the DWP. So, we would encourage people to appeal, if they can. Fiona’s experience shows how complicated and overwhelming the PIP system can be.

YOUR AUTISM MAGAZINE

39

Meet our team

One-to-one support to help autistic students thrive at university

Petrina Robinson, Specialist Mentor and Study Skills Tutor

W

hat do you do?

I’m a mentor for the National Autistic Society’s Student Support Service and I also teach study skills to undergraduates. I also do some support work in Northampton College (16-19).

What does a normal day of mentoring look like?

I see autistic students throughout the day, with breaks for a sandwich or to drive to another campus. Students are supported either in a location of their choice, like the library, or in a study room where we talk through/solve problems or celebrate achievements.

How did you get involved with the Student Support Service?

I was working with the National Autistic Society as an Education Outreach Tutor and a support worker when I was asked if I would like to support students. I was keen to

do this partly because my son has Asperger syndrome and he benefited from mentoring support at university.

What’s the most challenging part of your job?

Frequently it is difficult to phrase questions correctly to get the student to communicate their difficulties. Other challenges involve solving transport difficulties or

“I was keen to do this partly because my son has Asperger syndrome and he benefited from mentoring support at university.”

accommodation issues relating to sharing a flat with other students.

Academically, it can be challenging to help them cope with their workload, but I can help through teaching time management, or by helping students learn to take notes or listen to a lecture. I sometimes advise on what to do if there is a room change, or what to do when they have to present work to their group and lecturer. Sometimes I might help students with sensory issues by finding them a quiet place to work or by helping them cope with busy areas in the university.

What is your favourite part of the day?

I like actually talking to the students (as opposed to travelling or completing paperwork!), and finding out what difficulties they have and how I can help them. It’s great when the help is such that it will relieve anxieties or solve problems and I can see or hear the relief in their eyes, faces or voice. ●

Find out more

Read more about our Student Support Service at www.autism.org.uk/studentsupport.

YOUR AUTISM MAGAZINE

41

RESOURCES

Giveaways

Kids like us

We have a signed copy of Henry Normal’s new book: A Normal family: Everyday adventures with our autistic son to give away to members. To enter, email YourAutismMagazine@nas. org.uk with your name by 30 June, quoting ‘A Normal family’. The winners will be announced in the next issue.

AUTHOR: Hilary Reyl PUBLISHER: Farrar, Straus and Giroux PRICE: £6.99 VERDICT: A heartwarming story about acceptance, told through the eyes of an autistic teenage boy KIDS LIKE US is a book about a teenage boy who is spending a month on location with his film director mum.

Martin faces all the typical challenges of being accepted in a new situation. However despite looking “normal” Martin has a hidden difficulty which makes fitting in all the more challenging.

The book is written from the perspective of Martin, an autistic boy.

We get glimpses of the world through his eyes as he navigates his way through friendship and love.

It challenges the neurotypical “projected” idea of the need to blend in

Congratulations to Charlotte Stace who won a copy of Autism, anxiety and me by Emma Louise Bridge, and to Debbie Hawker who won a copy of The ASD feel better book – a visual guide to help brain and body for children on the autism spectrum

by Joel Shaul. and not stand out.

This is a heart-warming story about acceptance and challenges the reader to think about who needs to adapt.

Reviewed by Sarah Winstanley YourAutism Magazine reader

Become a reviewer

Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk.

James Bryan’s six favourite… walks (see page 6)

1

THE PENNINE WAY The Pennine Way runs for 267 miles from the northern Derbyshire Peak District, and ends at Kirk Yetholm, just inside the Scottish border.

2

HIGH WEALD LANDSCAPE TRAIL A 95-mile route in England between Horsham, West Sussex and Rye, East Sussex, designed to pass through the High Weald Area of Outstanding Natural Beauty.

3

LATRIGG THE LAKE DISTRICT For a shorter and easier walk for all the family, try Latrigg (1.5 miles) with a lovely view of Keswick.

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

43

RESOURCES

Teaching pre-employment skills to 14-17year-olds. The Autism Works Now!® Method AUTHOR: Joanne Lara and Susan Osbourne PUBLISHER: Jessica Kingsley Publishers PRICE: £18.99 VERDICT: Written for a US audience but still useful to help prepare your teenagers for the world of work

IN JUNE 2014, IN THE US, only 16.8% of the population with disabilities was employed. The book looks specifically at the Autism Works Now Method, and provides ideas and support materials to help prepare candidates for the workplace, interviews and the world of work and sets out the structure of the workshops.

I did find the book useful, but less so than I had hoped as the Method is used in the States, but not in this country as far as I can tell. Also, the book is a little hard to get into, as our kids don’t have the same assessment and support system.

However, the book did serve as a useful wake up call to me. It showed me that our children’s needs are probably similarly under-met in terms of the lack of vocational courses and pre-employment skills taught in schools and colleges. My son is 13 and it has encouraged me to focus on his strengths and likely employment prospects, and to think about how we can start preparing him for success now. I could use some of the sections, checklists and worksheets with our son myself, and I found Temple Grandin’s foreword inspiring.

Read more reviews on Your Autism Extra at www.autism.org.uk/digitalyam.

Reviewed by Karen Wright, Your Autism Magazine reader

4

THE WEST HIGHLAND WAY Immerse yourself in the wild landscapes of Scotland on the country’s best loved long-distance walking route. The West Highland Way stretches 96 miles.

5

COAST TO COAST The Coast to Coast Walk is a 192-mile longdistance footpath in Northern England. It passes through the Lake District, the Yorkshire Dales and the North York Moors.

6

WICKLOW WAY Beginning south of Dublin, the Wicklow Way combines easy accessibility with a wide variety of scenic experiences, some of them in truly remote upland areas.

If you like long-distance walking, how about challenging yourself to one of our treks?

Sign up at www.autism.org.uk/get-involved/raise-money/trek-walk.

YOUR AUTISM MAGAZINE

45

HARRY’S STORY

Harry plays and also coaches a basketball team

I’m a… basketball player This year has been a slamdunk success for Harry Herbert! The 16-year-old’s talent on the basketball court has taken him all the way to Abu Dhabi, where he is getting ready to play for Great Britain in the 2019 Special Olympics World Games.

BY HERMIONE CAMERON

46

SUMMER 2018

B

ecoming an Olympic athlete is a remarkable feat, and not one many of us can tick off our ‘to do’ list for one lifetime! It is certainly not something that Harry and his family initially predicted would be at all possible. Harry was diagnosed with autism at the age of five, and had previously suffered from seizures. As a result, doctors predicted that his physical and mental development would be severely affected. He had difficulty walking distances as his legs would become easily tired without the aid of a pushchair.

Harry’s mum, Sharon, said, “Harry is a friendly happy boy who tried to go to local clubs such as Cubs, but couldn’t cope.” She adds that Harry’s kind nature is both a blessing and a curse, as he occasionally allows himself to be taken advantage of by other young people in day-to-day situations.

It was thanks to basketball that Harry began to develop confidence and improve his physical skills. Harry developed a love of the sport at the age of nine, when he began playing at a Special Olympics club, and since then, he and his team have taken part in several competitions.

He also plays Boccia, a variation of the popular French game ‘Boules’ for athletes with physical disabilities, in the Special Olympics, and led the team to a gold medal victory in the national games. He now lends his experience as an assistant basketball coach at a one-hour session too, helping a team for the less abled. Harry

Harry also won a Broxbourne youth achievement award for 2018

enjoys playing the keyboard, pool, and Xbox, as well as spending time with his two cats.

Harry’s achievement is an incredible one. He tells us, “I feel really proud as basketball is my favourite sport. I am happy. I love basketball.”

Harry and his family are hopeful that he will definitely be able to play in the World Games next year. In order to do this, they will need to raise a total of £2,500, and would be grateful for any support through their JustGiving page at: https://crowdfunding.justgiving.com:443/ sharon-herbert. We are so excited to see what the future holds for Harry Herbert, both on and off the basketball court! ●