Your Autism Magazine Issue Summer 2014

Autism YO U R

www.autism.org.uk

MAGA ZINE

STARTING FROM SCRATCH Three mothers on setting up schools

What is happiness?

Richard Ashcroft tackles a tough question

+

VOL 48 – NO 2 • SUMMER 2014

ALSO IN THIS ISSUE:

WE’RE HORTICULTURISTS AND JAM-MAKERS! WHAT TO DO ABOUT BITING ANXIETY AND HOW TO MANAGE IT

THERE FOR EACH OTHER

Violet and her son Ryan share their story

You pushed It happened Government launches new ‘Think Autism’ initiative

Summer 2014 EDITOR Eleanor Wheeler WRITERS Flynn Hagerty, Zoey Parsons, Jessica Tackie

16

NAS HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk A DV E RT I S I N G Ten Alps Publishing One New Oxford Street London WC1A 1NU Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com

28

SUBSCRIPTIONS Only available to NAS members C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 supportercare@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Eclipse Colour Tel: 01536 483401 F RO N T C OV E R © Mike Pinches www.mikepinches.com 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 2014 Summer Vol 48, 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 NAS. 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 NAS endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that the NAS endorses or supports the groups or individuals running the website, nor does the absence of a website imply that the NAS does not endorse or support the group or individual running the website.

25

W

elcome to the summer edition of Your Autism Magazine. I’m delighted to introduce myself as the new Editor, and also to share the exciting news that the Government announced the new ‘Think Autism’ initiative in April in response to our Push for Action campaign. You can read more about what this means for you on pages four and seven.

We’re also delighted that Your Autism Magazine has been shortlisted for the MemCom Charity Magazine Award 2014. Many thanks to our readers for completing our survey; your feedback is very valuable.

Big news aside, the focus this issue is on education and family support. We interviewed three parents on the business of setting up autism-specific schools, as well as the daughter of pioneer in the field, Sybil Elgar. Professor Stephen Shore shares his wisdom on educating people with autism and we also hear from a mother of four and her teenage son about family support and education. Besides this, you’ll find advice on biting, anxiety, and much more.

We always welcome feedback and suggestions for future issues, so do get in touch. Have a wonderful summer, whatever you get up to.

Eleanor Wheeler

EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... deal with anxiety?

16 Feature: My story 21 Feature: Autism and ethics 25 Feature: Promoting success in education 28 Interview: Setting up schools 33 Advice: NICE Quality Standards 37 Advice: Biting in children 41 Spotlight on support: Education Rights Service 44 Resources 46 We’re... Horticulturists and jam-makers

PAGE

37

YOUR AUTISM MAGAZINE

3

News

A round-up of the stories that affect you

‘One Stop Shop’ opens in Kilmarnock Norman Lamb MP, campaigner Anya Ustaszewski and Mark Lever at the announcement of ‘Think Autism’

Push for Action secures £4.5 million from Government On 2 April, Minister for Care and Support Norman Lamb announced the Government’s revised adult autism strategy for England. The new initiative, coined ‘Think Autism’, provides ring-fenced money for an innovation and community-led awareness programme for the first time.

The innovation fund will support the development and replication of new services. The awareness programme will help build understanding among professionals working with people with autism and the general public, and make communities more autism-friendly.

Push for Action has been calling on the Government to unlock the barriers faced

4

summer 2014

by councils and the NHS in implementing the autism strategy.

In addition to the funding, we’ve also secured significant breakthroughs in key areas such as training, guidance, data collection and monitoring.

NAS Chief Executive Mark Lever said, “It’s very positive that Think Autism is tackling core issues that affect the quality of the lives of adults with autism.

However this will only make a difference if local authorities and health services establish the best possible plans for local services”.

Find out more about how ‘Think Autism’ will affect you on page 7.

Visit www.autism.org.uk/ pushforactionwins for more information.

In March, a new groundbreaking autism and advice information centre opened in Kilmarnock, Scotland. The Kilmarnock ‘One Stop Shop’, which is funded by the Scottish Government and run by the NAS, aims to address the severe challenges experienced by local people with autism and their families in attempting to access basic support services.

Lesley Moore contacted the Kilmarnock One Stop Shop after her nine-year-old son was diagnosed with Asperger syndrome. “Our son would not talk about autism or allow us to talk about it. An expert recommended a programme that allowed our son to understand not just his diagnosis, but other invisible disabilities and disorders”.

NAS Scotland works to alert the Scottish government to what is missing from Scotland’s autism support services. “The right support at the right time can make a difference,” said Robert MacBean, policy and campaigns officer for the NAS Scotland.

Sara is using photography to document autism in childhood

SUMMER 2014 • NEWS

News in brief A big thank you from the NAS

A PICTURE IS WORTH A THOUSAND WORDS When Sara Dunn’s son was

diagnosed with autism, she began documenting their personal journey through photography. It became important for Sara to capture the joys and the challenges for those affected by the condition, and so Admiring Autism was born.

Admiring Autism is a notfor-profit, social documentary campaign, which hopes to raise awareness of autism. Not only does the campaign feature photographs of Sara’s family, but it’s also a platform for other families to have their photos taken by Sara, or share their own photographs on its community web page.

Admiring Autism is currently concentrating on ‘childhood autism’, with the aim to expand its focus into ‘adolescent and

adulthood’. So far, 15 families have signed up to be photographed.

Sara says: “I want people to see autism, to visualize it and appreciate its severities, as well as its ingenuity, by placing members of a too often excluded community at the centre of artistic expression.”

If funding is successful an exhibition showcasing the photographs captured throughout the campaign will take place in time for World Autism Awareness month 2015.

For more information visit www.admiringautism. co.uk and www.facebook. com/admiringautism. To make a donation to the campaign visit www.gofundme.com/ Admiring-Autism.

Have some old-school fun this summer at our 1990s themed sponsored sports day.

Hosted by Dave Benson Phillips, it will include old-school races, a vintage fete and ‘90s disco ‘til late! The event will be in Dulwich Village, London on June 28. To find out more, email Eleanor.Badcock@nas.org.uk.

We’d like to thank everyone who helped make World Autism Awareness Day so special this year. Whether you took part in Onesie Wednesday in England, Wales or Northern Ireland, bounced for autism in Scotland, or did your own fundraising event, your efforts are greatly appreciated and you've helped make a huge difference to the lives of those living with autism.

The Autism Show is back this summer This year, The Autism Show comes to London on 13-14 June and to Manchester on 27-28 June. Both shows will cover topics such as diagnosis, bullying, sleeping difficulties, challenging behaviour, legal advice on special educational needs, employment, welfare rights, sensory integration and more.

To find out more or to book tickets visit www.autismshow.co.uk. NAS members can enter the code NAS14 to receive a discount.

Autism in Pink The EU-funded Autism in Pink project exploring the nature of autism as it affects women concludes in June. Visit www.autisminpink.net from late May to access the results – including an online book of personal stories from women with autism and Asperger syndrome, and a 35-minute documentary about the lives of those involved.

YOUR AUTISM MAGAZINE

5

NEWS • summer 2014

New app planned to help children with autism access the arts Circus Starr, in partnership with Therapy Box and Glyndwr University, has launched plans for a new app called Show and Tell. The app will enable children to gain prior understanding of an arts event to increase their engagement and enjoyment on the day, and will be available as a free download in September. The project is one of 36 Digital R&D Fund for the Arts initiatives in progress which look at using digital technologies to widen audience access and engagement in the arts. Circus Starr is recruiting children with autism to take part in research relating to the project. To find out more, email cath@circus-starr. org.uk.

Using technology to engage children with autism in the arts

Students busy learning at Sybil Elgar School

Social Care inspectors find NAS schools ‘outstanding’ Congratulations to NAS schools, Sybil Elgar School and Radlett Lodge School for maintaining the ‘outstanding’ rating that they have held for many years following Ofsted social care inspections in March.

Congratulations also to everyone at Thurnscoe House, our newly-built facility at Robert Ogden School which opened last year, for achieving an ‘outstanding’ rating in their first ever Ofsted social care inspection.

Also well done to everyone at Clayton Croft Children’s Home at Robert Ogden, which maintained a ‘good’ rating in its latest Ofsted social care inspection.

Jacqui Ashton Smith, NAS Head of Operations for Schools said: “We’re absolutely delighted with our Ofsted social care inspection reports, which are testament to all the hard work and dedication that go into providing a positive and nurturing environment for our residential pupils.”

• To find out more about NAS schools, visit www.autism.org.uk/ourservices/education-and-schools • For advice on education, contact our Education Rights Service on 0808 800 4102 or email educationrights@nas.org.uk.

Sparkling storytelling in Salford Acclaimed children’s novelist and poet Michael Rosen and The Hiccup Theatre have created a new theatrical rendition of the classical tale of Pinocchio.

A relaxed matinee performance will take place on Sunday 18 May at The Lowry, Salford. Show-goers can join Pinocchio, his nose and his little grasshopper friend for the performance, and there is also a free opportunity to have a look around the theatre in advance of the show. If you need to get to know the building before you come on the day so you know what to expect, this can be arranged when you book.

Suitable for children aged three and older and their accompanying families, past Hiccup Theatre productions have

been praised as, ‘absorbing, exciting, inventive and wonderfully creative’ .Tickets are £6 each with complimentary tickets for essential companions.

For more information, or to book tickets, call the Box Office on 0843 208 6000, or email boxofficeadmin@ thelowry.com. For more info about the show, visit www.hiccuptheatre.com/ whats-up.

Keen to get outside and get active this summer? Why not boost your resolve by doing a sponsored run in the autumn? The Great North Run is on 7 September in Newcastle and the Royal Parks half marathon in London is on 12 October. For more information please email events@nas.org.uk or call our Supporter Care Team on 0808 800 1050. To discover more ways you can get active for autism, visit www.autism.org.uk/get-involved/raise-money/get-active.

6

summer 2014

SUMMER 2014 • NEWS SPECIAL

Your PUSH FOR ACTION achievements A huge thank you to the 12,000+ supporters who took action – from signing petitions, writing to MPs or local newspapers to meeting decisionmakers and attending consultation events. As a result of your actions, we have secured a number of our key campaign recommendations.

Here’s what they mean for you:

In addition… the Government has also promised to ensure more key professionals are trained and that councils are planning for autism services by collecting the right data.

For more information and details on further important changes under the new government initiative, ‘Think Autism’, please visit www.autism.org.uk/ pushforactionwins.

YOUR AUTISM MAGAZINE

7

Research in focus Bringing you news of the latest research into living and working with autism Early detection of autism and ADHD The Babylab at Birkbeck, University of London has launched a study looking at early emergence of autism and ADHD. Researchers hope to discover more about the earliest signs of the conditions by looking at the younger siblings of children with a diagnosis.

One of Babylab’s infant scientists at play

The latest phase of the ‘Babysibs’

project, Studying Autism and ADHD Risk in Siblings (STAARS) aims to map brain development from birth in order to understand more about the early signs of autism and ADHD. It is the first time that researchers have looked at ADHD and autism together on such a large scale. Forty per cent of children with autism meet the criteria for ADHD and there are aspects of cognitive development which are shared in both conditions – but approaches to treatment have been quite different.

Having similar genetic backgrounds means the siblings of children with autism or ADHD are at particularly high risk of developing the conditions themselves. By tracking their progress early on and comparing the results against which ones go on to be diagnosed when they are a bit older, the researchers will be able to identify early indicators. This will mean moving towards earlier diagnosis and intervention for future generations of children.

10

SUMMER 2014

Involving over 400 families from across Europe and the UK, the study will monitor children at three, five, ten and fourteen months, and at three years. It will use advanced techniques to map brain development, including eye tracking, measuring heart rate and perspiration, EEG (monitoring small voltage changes in the scalp to see which cells are at work) and optical imaging (using a scattering of light beams on the scalp to measure blood flow in the brain). The researchers will also use questionnaires and interviews to find out more about the children from their parents, and observe their behaviour in play-based assessments.

With over £2.5 million in funding,

STAARS will build on research published by Birkbeck’s Babylab scientists in 2012 which detected signs of autism in babies as young as six months old. The research team expects

to see early results from this phase in 2017, and eventually they hope to follow children even later in life and look at other aspects of the conditions.

The pan-European nature of the study means the number of families involved can be greater, and the results will therefore be more powerful.

Professor Mark Johnson said: “We are very excited to be embarking on what is one of the most innovative collaborative research projects into early markers of autism and ADHD to have been carried out to date”. ● Do you have a child aged three to ten months with an older sibling with a formal diagnosis of autism or ADHD? If you are interested in taking part, email staars@bbk.ac.uk or call 020 7079 0761.

Find out more about the STAARS project at www.staars.org.

RESEARCH • FOCUS

The handbook provides guidance for professionals on how to design for adults with autism

Correction to Back to the future (Vol 48 - No 1): full link to research article is: http://psycnet.apa.org/journals/neu/28/1/55.pdf&uid=2013-32207-001&db=PA.

Designs for living Post-graduate researchers at the Helen Hamlyn Centre for Design have been investigating how to design environments specifically for adults with autism.

Their latest handbook covers everyday activities.

Designing Everyday Activities: Living Environments for Adults with Autism is the latest in a series of four handbooks created by designers at the Helen Hamlyn Centre for Design at the Royal College of Art as part of a study commissioned

by The Kingwood Trust in partnership with BEING. The handbook includes ideas for how to adapt familiar designs to make them more autism-friendly, and is intended to be used for guidance by architects, planners, care staff and anyone supporting an adult with autism. Taking into account the sensory and social issues of people on the autistic spectrum, the designers have also come up with concepts

for household objects that are intended to be sensitive to the ‘autistic interest in pattern and repetition’. Professor Simon Baron-Cohen, Director of the Autism Research Centre at the University of Cambridge, described the researchers as ‘role models for designers interested in neurodiversity’.

The other three handbooks address housing design, living environments and outdoor environments for adults with autism.

You can download the handbooks here: www.hhc.rca.ac.uk/462/ all/1/publications.aspx To find out more about the Helen Hamlyn Centre, visit: www.hhc.rca.ac.uk.

NEW ANTI-BULLYING PROGRAMME TRIALLED IN WALES An anti-bullying programme developed in Finland has been introduced to schools in Wales. The programme called KiVA is an acronym of a Finnish phrase meaning ‘against bullying’, and it is also the Finnish word for ‘nice’.

The programme is a practical tool for dealing with bullying and is implemented across the whole school. It includes lessons, strategies for dealing with bullying, support for parents and pupils and online materials.

KiVA has proved remarkably successful in Finland. Take-up is at over 90 per cent and the programme is funded by the Finnish Government. The programme was trialled for Key Stage 2 in 17 schools by Bangor University in 2012-13 and included 13 schools that had received funding from the Welsh Government.

Results will be published shortly but initial selfreporting by pupils shows a significant reduction in bullying and victimisation. Teachers’ feedback suggested the programme had a positive impact on children’s wellbeing and behaviour. Some 11 schools are continuing with the programme.

Following funding from the BIG Lottery, the programme is expanding across all Key Stage 2 classes in a further 21 schools in Wales.

Find out more about KiVA at www.kivaprogram.net.

Could you support vital research work?

One of the ways in which The National Autistic Society supports research is by advertising for participants in research projects on our website. To view current research projects which need participants, visit www.autism.org.uk/research/participate.

YOUR AUTISM MAGAZINE

11

Readers to the rescue!

Do you have a problem our readers can solve? Get in touch and benefit from the experience of other people living and working with autism.

For expert advice and information

on any autism-related issues, call our Autism Helpline on

0808 800 4104

© Alamy

Help me next!

What approaches and tactics do parents of children with taste sensitivities around eating adopt to get their children to try new foods?

Dolls can come in all shapes and sizes My nine-year-old son says he wants a doll. I had this with my older son – he’s 11 and has still got his doll. I think I’d rather introduce other toys. How could I do this?

— Lynne Let him have one.

Forbidding a little boy from playing with what makes him happy does more damage than letting him play with ‘girl’ toys.

If playing with a doll helps your son deal with things or helps him to relax, that’s a good thing.

Would we discourage a daughter from wanting to play football or play with cars? Let him be

the person he wants to be, not make him fit in. It’s about time we stopped forcing children into boxes, and trying to ‘normalise’ them by making them do what ‘normal’ children do.

— Janet and Alice You might want to ask your son why he wants a doll. He might want to enact everyday roleplaying situations with it or he might want it as a companion in the same way many children relate to teddy bears. It is thought that people with autism are more likely to engage in activities associated with both genders (see The

Essential Difference: Male and Female Brains and the Truth about Autism by Simon Baron-Cohen).

For example, our son, who has Asperger’s, has a pink teddy bear whose company he enjoyed throughout his childhood and still does now, aged 24.

— Mary

— Gina

Email your problems or answers to YourAutismMag@ nas.org.uk or write to: Readers to the rescue!, 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 letter to be published. We reserve the right to edit submissions.

YOUR AUTISM MAGAZINE

13

How do I?

deal with

anxiety?

The effects of anxiety can be both psychological and physical and can have a significant implication on peoples’ lives, regardless of their age. Our expects advise on the best ways of addressing anxiety and maintaining wellbeing.

E

BY JASON POWER AND JO STEVENS

xperiences which reduce an individual with an ASD’s ability to maintain wellbeing and manage anxiety can happen for a range of reasons. Some research has found that 65 per cent of adults with an ASD may also have an associated mental health issue, such as anxiety or depression. However, there are ways of promoting greater levels of wellbeing and reducing the everyday impact anxiety may cause.

This may in turn prevent more acute difficulties from developing in the future.

1

DEVELOP A GREATER PERSONAL UNDERSTANDING BY KEEPING A MOOD DIARY

It can be helpful to understand the triggers for negative thoughts and feelings. For adults with an ASD, sources of difficulty may include social situations, dealing with an unexpected event, or sensory overload. Keeping a diary in which you write about certain situations and how these make you feel may help you to gain better understanding. Use the diary to keep track of your mood and what particular situation or event that made you feel that way. It can also help to keep track of positive as well as negative moods.

Review your diary regularly and try and identify any patterns.

FOR CHILDREN… Adults living and working with children with autism need to be ‘detectives’ to identify causes for anxiety. Preventative strategies include using explicit language supported by pictures and symbols to help children understand any changes in routine and upcoming events.

14

SUMMER 2014

2

CREATE A WELLBEING OR ANXIETY PLAN

Having identified possible sources of difficulty, create a wellbeing or anxiety plan. This is a list of things and situations that cause anxiety and distress as well as solutions and strategies you can use to help you manage your feelings. Use this plan to monitor whether a particular strategy is working or not. Over time, you can add new solutions and strategies. Visit www.autism. org.uk/anxiety-in-adults for an example of what this plan may look like.

FOR CHILDREN… Planning ahead using Social Stories™ and visual supports will help children to understand social expectations and appropriate responses. This can help them to make sense of different situations and avoid misinterpretation by others, causing further anxiety.

TAKE CARE OF YOURSELF USING THE ‘EMOTIONAL TOOLBOX’

3

Tony Attwood, a well-known psychologist in the field of ASDs, conceptualized the ‘Emotional Toolbox’. It represents a collection of tools or strategies designed to help people deal with negative emotions. Some tools might include going to a quiet place, doing physical exercise, doing a preferred activity or reading personal accounts by others with an ASD. Come up with a list of things that you can do for a quick mood boost, including any that have helped in the past.

Try and implement a few of these ideas each day, even if you’re feeling good.

FOR CHILDREN… Helping children to feel good about themselves and their abilities will enable them to develop resilience and cope with the ups and downs of daily life. Focusing on and praising effort and attitude will help to build a child’s self-esteem. Adopting a small steps approach to activities or goals will also encourage success.

FIND WAYS TO RELAX

4

Someone with an ASD can find relaxing very difficult, but using a special interest, enjoyable activity or relaxation technique in your daily routine can help. If you know a particular situation is coming up which may cause distress, factor in more time beforehand and afterwards to help you recover.

Other techniques can include deep breathing exercises, yoga, pilates and mindfulness, taking a bath, listening to relaxing music or aromatherapy.

FOR CHILDREN… Regular opportunities for ‘chill-out’ time are particularly important for children with autism who often live in a state of high anxiety due to the social and sensory demands of everyday life. These can be indoor or outdoor, lengthy or brief, creative or practical, solitary or social – every child will enjoy something different.

5

HOW DO I? • FEATURE

CULTIVATE SUPPORTIVE RELATIONSHIPS

For some adults with an ASD, maintaining wellbeing may involve having the opportunity to spend time by themselves away from others. It is also worth considering the benefits of having a network of contacts for when you feel you may want company or need support, which might include a trusted family member, friend or work colleague. You might be able to find contacts by joining a local or online support group a befriending or e-befriending scheme or a special interest group.

FOR CHILDREN… Making a list of adults or peers who can help may be useful. Some schools appoint a responsible buddy to befriend a child with autism. Local Authorities may offer youth groups or online support such as e-befriending, too.

More information

GET SPECIALIST HELP

6

A specialist or a counsellor with experience of ASDs may be able to help you identify triggers and find strategies. You can speak to your GP about any concerns you may have about your wellbeing. Your GP will listen and may refer you to a specialist. You can also use our Autism Services Directory or Helpline to find health professionals in your area. The BACP (British Association for Counselling and Psychotherapy) website also lists accredited counselling professionals. Visit www. itsgoodtotalk.org.uk/therapists.

• Our Autism Helpline can tell you more about local support that may be available. Call 0808 800 4104 (Monday-Friday, 10am-4pm), or search yourself on the Autism Services Directory: www.autism.org.uk/directory.

• Visit www.autism.org.uk to find out more about social isolation, counselling and finding a counsellor.

• For information on mental health, visit www.mind.org.uk.

Recommended books and resources

• Survival strategies for people on the autism spectrum by M. Fleisher • The complete guide to Asperger syndrome by T. Attwood • Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome by W. Lawson • Autism: Understanding behaviour by Caroline Hattersley

Free downloadable resources:

A survival guide for people with Asperger syndrome by M. Segar: www-users.cs.york.ac.uk/alistair/survival/survival.pdf The Mind guide to relaxation by MIND: www.mentalhealthintheuk.co.uk/Mindguidetorelaxation.pdf

?

FEATURE • MY STORY

There for each other: Violet, Ryan, Shona, Hollie and Kelvin

16

SUMMER 2014

MY STORY • FEATURE

My story

Violet and Ryan Violet Storey is a mother of four from Fermanagh, Northern Ireland.

Her son, seventeen-year-old Ryan, is in his final year at school.

Ryan has a diagnosis of Asperger syndrome, and two of his siblings, Hollie and Kelvin, are also on the spectrum. Violet and Ryan talked to Your Autism Magazine about their experiences.

BY ELEANOR WHEELER

Violet:

I’m a forty-five-yearold mother of four: Shona is twenty, Ryan is seventeen, Hollie is sixteen and lastly wee Kelvin is nine. I am a single parent and neither I nor the children have had any contact from their father in over seven years. Ryan and Hollie have been diagnosed with Asperger’s and Kelvin with autism. Kelvin is also mainly non-verbal.

GETTING DIAGNOSED Ryan was the first of my children to be diagnosed in 1995. I always suspected he had traits of autism – I was fairly familiar with the condition as my nephew had already been diagnosed by this time and I had done some research into it. Ryan was very literal in his interpretation of speech and had problems making friends and organising himself. It was his teacher who suggested it might be autism, and I felt so relieved I could have hugged her! I asked for a referral through my GP and Ryan was diagnosed very soon afterwards.

Kelvin was diagnosed one month after his second birthday in 2006.

I had no doubt he had autism and basically needed it confirmed. His communication skills had developed normally until he was about fourteen months old when it all just seemed to stop. A health visitor referred him to a paediatrician and between her and the psychiatrist he was diagnosed within a few months.

A small part of me was hoping it might be something else, but mostly I felt relieved because once you know what you are dealing with, you can start to move forward.

Hollie was only diagnosed last year.

She showed a lot of the same traits as Ryan, as well as others. Hollie scored equally in Asperger’s and ADHD tests which prevented a final diagnosis and she was referred to CAMHS. Years of appointments followed, and the stress was so great that I decided to put it on hold. When she got a bit older we tried again and this time with success.

I think it is harder to diagnose girls, especially if they are bright like Hollie.

GETTING SUPPORT Following the boys’ diagnoses, which were given over the phone, there was no further advice about what happened next or where to go to for help. With Hollie, I did have a follow-

up appointment and was given a folder of information and the chance to ask questions. This was useful, but would have been more so after my first child’s diagnosis!

I found out about the NAS through a chance meeting with a wonderful woman called Caroline Bogue (a Family Liaison Officer at the NAS) at a social skills group. She has now become a wonderful friend with a wealth of useful information and infinite patience!

Caroline helped to get my garage converted into an extra bedroom so Kelvin could have his own room and the others could have some sleep.

This has been the single most beneficial and valuable help to our whole family. She also introduced me to the HELP programme which was very informative, and over the years has helped me fill in forms, get statements, access social groups and summer schemes for the children and fight their corner when there were problems at school. Caroline also got me and my family involved in the ‘A* for Autism – make every school a good school’ campaign.

With Caroline’s help, a group of local parents set up a NAS support group and we meet once a month to share

YOUR AUTISM MAGAZINE

17

FEATURE • MY STORY

experiences, have a laugh, access advice and organise family outings.

This is a lifeline and it’s great to mix with others who really understand and ‘get it’ when you get excited by something that would seem bizarre to someone else. I call this wee group my autism family.

Honestly, my household would not be as relatively calm as it is now without Caroline, and the children love her! Knowing there is help there makes you feel less isolated. I have no direct family help – no grand-parents, partner or respite so having someone there can be the one thing keeping you going.

Even if you don’t need it, just knowing it’s there is a real weight off your shoulders and no doubt I’ll be using her advice a lot more when Ryan goes to university in September.

My advice to other parents is to always remember your child is the same person they were before the diagnosis, to never underestimate your child or compare them to others, to develop a thick skin and finally to love every minute and enjoy every achievement no matter how small!

Ryan:

introverted as a result, although I did well academically.

School has been good in the past three years. I’ve developed as a person in so many ways and I feel confident and good about myself.

I’ve got a good circle of friends who like me for who I am and accept my many shortcomings. My best friend, Gareth, is particularly supportive and has been like the older brother. My classroom assistant, Mrs Edgar, has also been a huge help to me and my mum and she is like a second mother to me. School is a positive place for me and I always enjoy being there.

I’m incredibly proud of my GCSE and AS results. I’m pleased with them because I feel they’re the best I could have achieved. I’m also a senior prefect in school, one of only 14 or so in a year of about 60. To be part of a group that has had their hard work and contributions to the school acknowledged is quite an achievement. I’m also very pleased with my musical contributions to the school, playing guitar, drums and doing vocals at various performances and concerts.

FEELING SUPPORTED My mum has done a lot to help me in various aspects of my life but I’m most grateful for the fact that she always puts up with me when I’m at my worst and is always ready to forgive me and move on.

The NAS has also helped me in several ways. They helped me to meet other people my age who share my condition, and that in itself has helped us all develop. They also arranged social skills classes. Despite hating these at the time, they have proven – and continue to prove – invaluable. I feel the most notable help I’ve received from the NAS has been from our Family Support Worker, Caroline. She has been a great help and has really been one of the driving forces behind my personal development. She arranged many of the trips and classes that I’ve been to with the NAS and she’s been a very good friend. I can honestly say that without the work she’s done, I wouldn’t be half as well off as I am today. The help I’ve received has made me feel better about myself as a whole. It has helped me to feel more confident in conversation and has improved my outlook on everything I do.

I was diagnosed with Asperger’s syndrome when I was nine or ten years old. Because I was so young, I didn’t really feel anything as I wasn’t entirely sure what was going on or what the condition was. I only began to understand more about how it was affecting my life a few years ago.

When I was younger, the main problems I faced at home were probably due to my impatience and short temper. Nowadays, I’m fairly confident with myself but occasionally having Asperger’s makes me feel singled out or alone.

BIG DREAMS I hope to attend Queens University Belfast in the next school year to study Computing and Information Technology, and depending on how it goes, possibly pursue a postgraduate course in a specific field. I chose to do CIT because I am enthusiastic about the use of computers.

I’d like to go into a career in operating a computer system within a business or developing software. I want to get into a well paid job that I enjoy, even if I am told that these things are mutually exclusive. In ten years time, I hope I’ll be working in a well paid and enjoyable job and raising a family.

GROWING IN CONFIDENCE I was alright at school until about P5 [aged eight-nine] when my honesty, which would have previously been seen as cute, started getting me into trouble. I struggled with the social side of school and became quite

Would you like to share your story about any aspect of living or working with autism? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue.

18

SUMMER 2014

Share your story

EVERY DAY IS A NEW DAY My advice to other people with Asperger’s going through school is to keep your head up and persevere. Find something you’re good at, stick at it, and get better. Find people you enjoy being around and stick with them.

Treat every day as a new one. Treat every experience as a lesson and use it to improve your future. When it comes to picking subjects, pick something you love doing and you’ll never work another day in your life.

Finally, my message to my mum and to Shona, Hollie and Kelvin is this: stay awesome. ● To find support services near you, visit www.autism.org.uk/directory

AUSTISM AND ETHICS • Feature

The happiness agenda

Richard Ashcroft is a Professor of Bioethics at Queen Mary University, London and has a young son with autism. He reflects on his experiences as a father and thinks about what accepted concepts of what it is to be happy and ‘normal’ could mean for people with autism.*

RICHARD SPOKE TO ELEANOR WHEELER

YOUR AUTISM MAGAZINE

21

Feature • AUTISM AND ETHICS

I

first became interested in autism the way most people do: autism became interested in me.

My son was a happy, healthy toddler and was doing well on all the growth charts. He and I were (and are!) very close and although there were little things which seemed a bit unusual – he didn’t talk much and he had some unusual interests – we just assumed that this was part of his individuality. Just after his third birthday we were told he had an autism spectrum disorder. We were given some leaflets and phone numbers and sent on our way.

Two things happened after this.

The first is that my world fell apart, I became depressed, I was terrified for his future, and I went through the full gamut of emotions usually associated with bereavement. His mum was more stoical, mainly because she’d realised and admitted to herself that our son was autistic much earlier.

The other thing that happened is that the NHS kicked into action – we had great support from the child development service, especially speech and language therapy, and from our son’s nursery. We were able to get a statement of special educational need and he had a good transition to primary school.

Life is not straightforward, and there’s a lot of stress and heartache, but he is a happy boy who is very loving, making good progress educationally and is very well accepted by friends, family and his school. So we hadn’t lost our son; autism is in him and part of him and shapes his and our lives. In our own ways we’ve adjusted and come to terms with his differences.

In my working life as a ‘bioethicist’, I think a lot about the ethical challenges

22

summer 2014

“I do think we need to look for better ways to talk about the idea of what’s a ‘good’ life with autism.

Taking autistic people seriously as experts on their own lives would be a good start.” in modern medicine and medical research. Since my son’s diagnosis, I have been asked to talk about ethics and autism several times and, to be honest, I find it very hard. In the early days I gave speeches which were more like stand-up comedy without the jokes, really just breaking down in public. But I found I touched a chord with my audiences. And as I have come to accept, understand and love my son’s autism as an essential part of him, I find it easier and the jokes have come along! But the questions about ethics and autism are really difficult, interesting and important for us as parents and as a society.

The really central thing I wonder about is this: when we do research in autism, what is it we want to know and why? And for whose benefit? I find the emphasis on genetic research troubling, not only because there is a history of the abuse of genetics in disability, but also because while understanding the biology of autism

AUTISM AND ETHICS • FEATURE

is both interesting and important, it doesn’t help meet our present needs at all. Research into the treatment of autism’s medical symptoms, occupational therapy and even speech therapy seem to come well down the scale of scientific priorities. Yet so much of what is done – or not done – to support people with autism takes place in this absence of evidence and I think autistic people suffer as a result.

Moreover, when researchers do focus on ways to help people with autism, there are difficult challenges which are too often skated over. Is passing as ‘normal’ a good goal? If we concentrate on helping autistic children act just like everybody else, is this really what we – or they – want?

Too much of the time we assume that ‘normal’ or ‘neurotypical’ happiness is the only kind that matters, yet so often autistic people tell us that they are happy, or tell us why they are unhappy, and we don’t listen or give their views enough weight. So, at least sometimes I think we approach autism more as a problem for ‘us’, the neurotypicals, rather than for ‘them’, the autistic people.

I am probably as prone as anyone to making this mistake, and my son is fairly patient in dealing with my mistakes. I think we need to look for better ways to talk about the idea of a ‘good life with autism’.

Taking autistic people seriously as experts on their own lives would be a good start. Developing measures for and instruments of happiness and wellbeing which start with autistic lives and experiences would be very useful. Recognising that stims can be signs of both wellbeing and suffering, and learning to tell which is which, would be particularly important.

Acknowledging that people who are

not verbal nevertheless have a lot to communicate and have experiences which are valuable to them and to others is crucial.

We all need to work on inclusion, that is putting people with autism first

“As a parent I work very hard to help my son flourish.

Sometimes I fail, but the idea that he will live a good life, and that his autism is part of that good life, not just an obstacle to it, is something I try to understand and promote.”

and helping them live the best lives they can. We need to be more openminded and smarter about what that means. As a parent I work very hard to help my son flourish. Sometimes I fail, but the idea that he will live a good life, and that his autism is part of that good life, not just an obstacle to it, is something I try to understand and promote.

Let’s make services and education and research focus on that, rather than on pathology, impairment and problems. What would a world be like for my son as an autistic person if we started from the assumption that there is nothing ‘wrong’ with him? ● To share your thoughts on ethics and other subjects, visit community.autism.org.uk * Richard’s opinions are his own.

YOUR AUTISM MAGAZINE

23

Working with students on the spectrum and having autism himself, Stephen has a first hand insight into effective teaching practices

Promoting success in education Stephen M. Shore is Clinical Assistant Professor of Special Education at Adelphi University, USA and lectures across the globe to raise awareness and understanding about autism. He explains how making socially inclusive changes to mainstream teaching can make a big difference to students with autism.

BY STEPHEN M. SHORE

I

was struck with the ‘autism bomb’ after 18 months of typical development. My parents were at a loss of what to do. At that time, there were no organizations or other resources to help parents and professionals support individuals on the autism spectrum. A diagnosis of autism was tantamount to a life sentence in an institution where the

most positive outcome might be a menial job in building maintenance or food services.

Early intervention and special interests Attempts by my mother to get me to imitate her were met by blank stares.

But one day, she flipped the interaction around and began imitating me.

Suddenly a connection was made and I became aware of her.

Using today’s terminology, my mother used an intensive homebased early intervention program emphasizing movement, sensory integration, narration, and imitation at a time when the concept of early intervention did not even exist.

Building on our connection, my mother got me to a point where speech began to return at four.

Even then, I had special interests.

Rather than discouraging these activities, my parents provided a variety of different objects for me to explore.

YOUR AUTISM MAGAZINE

25

FEATURE • PROMOTING SUCCESS IN EDUCATION

Stephen first developed his special interest in music as a boy My mother’s strategy suggests it is necessary to make that initial connection and develop a trusting relationship before any meaningful teaching can take place. Furthermore, encouraging special interests when they occur can lead to educational and vocational possibilities.

GRADE SCHOOL EDUCATION At age six I entered regular school kindergarten where I was a social and academic catastrophe. I was bullied and I was about a grade behind in most of my subjects. However, I had my interests – which were satisfied by reading books, taking notes, and copying diagrams until the next interest took over.

In many ways, a special interest is a gift to educators because it provides a path for teaching many subjects at school. Fortunately, my parents were aware of and supported my special interests. Parental involvement in education is important for all children and vital for those with autism or with other special needs.

At Middle and High School, things were easier partly because I was able to engage in my special interest of music. I joined the band, which gave me a structured activity to mediate my interactions with my classmates.

People on the autism spectrum are more successful in gatherings that are structured and activity-based.

If educators had today’s knowledge back then, I would have likely divided my learning between a resource room and regular education settings with a paraprofessional.

DEVELOPING SOCIALLY-BASED ACCOMMODATIONS I find that many educators get lost in a sea of possibilities when making changes to the curriculum for people with autism. Therefore it may help to consider the work from Adapting Curriculum and Instruction in Inclusive Classrooms: A Teacher’s Desk Reference*, in which curriculum modifications are classified under the nine domains of size (or quantity), time, level of support, input, difficulty, output, participation, alternate goals and substitute curriculum.

Let’s examine how to customize time to the needs of an individual on the autism spectrum, and how instruction in this area can be used to benefit and meet the needs of the entire class.

Our case study, John, is a 3rd grade student with limited verbal ability. He likes to know his daily school routine in advance. Often the teacher or paraprofessional will review the day’s schedule with John in the morning before circle time with the rest of the students.

At 10am one day, John asks his teacher when math will be taking place. Ordinarily, John’s teacher will give him the time for math class.

However, today there is a change in the schedule due to a school assembly taking the place of math at 11am.

John’s teacher realizes that he does not have the time to explain this modification to John and tells him that math will be later today – figuring that he can address the change in greater detail in about 15 minutes.

However, this indefinite answer serves only to ratchet up John’s anxiety.

A meltdown, including biting, ensues.

Most educators and others familiar with children on the autism spectrum would understand the two causes of the meltdown. First, a review of the schedule – especially with the modification – should have been done in the morning before class. Second,

when John asked when math was that day, it was imperative to explain the situation immediately.

At the same time as providing for John’s needs, reviewing the day’s schedule on a communal board at the start of the day benefits the whole class, whether they are on the spectrum or not. Putting John in charge of setting up and making changes to the schedule board allows him to process the change kinesthetically – meaning he can be a part of the class rather than being isolated with one-on-one instruction.

Handling the change in this way may also reduce, or even eliminate, the amount of time spent by staff on supporting John.

TO CONCLUDE Individuals with autism commonly develop deep or highly-focused interests. Usually, interests are considered as interfering with learning.

However, with some creativity on the part of the educator, these passions can be used as powerful motivators for teaching a curriculum, working on the activities of daily living or preparing for a career.

In class, it is important to make changes for a person with autism in a way that matches their needs and promotes social interaction. The more we can incorporate modifications into the general instruction of the class the more all students will benefit.

Attaining true inclusion means that both students with autism or having other special needs as well as those without them mutually benefit from meaningful instruction and social interaction for all. ● Stephen is the author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-Advocacy and Disclosure for people on the Autism Spectrum and co-author of Understanding Autism for Dummies.

More on this topic For further guidance on adapting the classroom for young children with autism, Sensory Strategies: practical ways to help children and young people with autism learn and achieve by Corinna Laurie is available from www.autism.org.uk/shop.

* Adapting Curriculum & Instruction in Inclusive Classrooms: A Teachers Desk Reference by C. DeSchenes, D. Ebeling & J. Sprague (1994).

26

SUMMER 2014

INTERVIEW • DOING IT FOR THE KIDS

Doing it for the

kids

Sybil Elgar set up the first autism-specific school at her house in London

Since the first autismspecific schools were set up in the 1960s, many parents of children with autism have been eager to take part in creating educational opportunities for their children. We spoke to three mothers about their experiences.

When did you first find out about autism and what events led to the diagnosis of your child? : My third child, Ben, was not even two when I just instinctively began to worry about his development. He seemed to spend a lot of time in his own little world and began to develop sensory issues.

Among other things, he didn’t seem to feel the cold. : My relationship with autism began 16 years ago when my son Liam was diagnosed

FB

KG

with autism, aged 2 years. : I knew about autism from members of my family being affected, but didn’t really understand much until we started having concerns about Alex’s communication at about 16 months.

He was never a smiley baby and had obsessive and rigid interests and language. Instead of taking a teddy bear to bed he used to take a calculator and spend hours adding numbers on it, and was terrified by noise.

CW

Meet the parents Fleur Bothwick OBE

Charlotte Warner

Kate Grant

Fleur, whose son Ben has autism, is helping to set up The Vanguard School, an autism-specific free school to be managed by the NAS Academies Trust which is planning to open in Lambeth, South London.

Charlotte is the mother of Alex who has autism and ADHD. She is involved in setting up The Rise School, a free school which will be co-located with Feltham Community College, a mainstream secondary school in Hounslow, West London.

Kate’s son Liam has autism, and she is the CEO and Executive Head of Jigsaw CABAS® School in Cranleigh, Surrey which opened fifteen years ago in 1999. She has been using NAS services for many years, including her local Surrey Branch.

28

SUMMER 2014

DOING IT FOR THE KIDS • INTERVIEW

“I think it is important for parents to be fully informed about the choices they have available to them and for all options to be open.”

— Kate Grant

What made you decide to get involved in setting up a school? : Setting up the school using free school funding was the idea of another mother and we will always be grateful to her. Lambeth borough where we live does not have a specialist secondary school for children on the spectrum, and we want our children to stay in the heart of their community – to work with and alongside their mainstream peers, to benefit from local resources such as work experience and to be near our professionals. : We chose an ABA (Applied Behaviour Analysis) home programme for Liam initially as it seemed to make most sense to us in terms of being able to help him learn, communicate and develop.

But I always saw this as a stepping stone to a wider and more socially based educational environment. I knew exactly what I wanted him to have access to and so it seemed to me the best solution was to establish this setting where specialist education and life skills training was available using the principles of ABA. This was how and why the Jigsaw Trust was established. We went onto open the Jigsaw School in 1999 to provide the same behavioural based education I saw my son benefitting from through the home programme. : A friend is the chief executive of Ambitious about Autism and we’d been talking about how the free school model offered a fantastic opportunity to develop really good provision for children with autism, and decided to set one up ourselves. We’ve partnered with Dimensions, who have a fantastic understanding of how

FB

KG

CW

to use supported employment and apprenticeships to develop workrelated experience. We believe we’ve got a really good focus on getting young people to the point where they leave school at 19 with the skills they need to live as independently as possible. That’s what keeps parents awake at night.

What do you feel the greatest successes have been so far? : An obvious success has been actually being granted free school funding for the school, but I would say by far the two greatest successes have been firstly our relationship with the borough – from Council Members and staff, through professionals and on to parents and carers. Secondly, our partnership with The National Autistic Society, who will bring over 50 years of educational experience to Lambeth and our children. : We are tremendously privileged in that we get to celebrate individual pupil successes on a daily basis, but also to continue to offer an outstanding level of education to children with autism after 15 years, and to have had Ofsted recognise this with their highest award twice in a row, is a real success. I also feel it’s a great achievement to have been able to create an educational environment both at the school and within our adult service provision which parents want their children and young adults to be a part of but, and also where staff want to work. : Developing a great network of parents who have supported us on our journey. A community of parents and supporters

FB

KG

CW

will keep you going during the really tough times on the journey to open the school. Another success has been securing a great head teacher. It’s a fantastic feeling seeing your vision translated into a curriculum and timetables and it’s great to see parents come for open mornings and get their questions answered.

What have been the greatest challenges that you’ve faced? : Our biggest challenge has been finding the right site and we are still struggling. We need more space per student than a typical mainstream school, we need outdoor space and somewhere that is safe and fit for purpose and all of this needs to be ‘value for money’ from a governmental budgeting perspective.

A tall order when you are looking at inner city land which all carries a premium for developers. : I think some of the challenges I faced when setting up Jigsaw are much the same as those I face today. A big one is awareness or lack of it, surrounding what autism actually means, not only for the individual diagnosed but also their families. I know that everyone involved within the autism community is working hard to increase awareness. : Actually developing the application for the school, all 150 pages of it, was incredibly hard work for the whole of our team.

We worked seven days a week, often late into the night, and these people are all volunteers. Also now we are going through planning permission for our temporary and permanent accommodation and that is a demanding process. SEN funding is changing this year as well and there is uncertainty about how the future is going to be different to current structures.

FB

KG

CW

Do you think it is important for other parents to get involved in schools, as you have done? : I believe that a child’s parents know them the best and usually know what is best for them. If you can pair that with

FB

YOUR AUTISM MAGAZINE

29

INTERVIEW • DOING IT FOR THE KIDS

“A community of parents and supporters will keep you going during the really tough times.”

— Charlotte Warner

KG

CW

Find out more To find out more about the NAS Academies Trust visit www.autism.org.uk/nasacademiestrust.

For information on how to set up a free school visit www.gov.uk/set-up-free-school.

30

SUMMER 2014

The original pioneer Jackie Cragg is the daughter of Sybil Elgar, who founded The National Autistic Society’s Sybil Elgar School in 1964, the world’s first autism-specific residential school.

“In 1960, Mum started a mainstream Kindergarten at our house, following training in the Montessori method. A parent came along and said she had a young son with autism and asked Mum if she would take him. Autism as a condition wasn’t really recognised in those days – the children were called ‘psychotic’ or ‘emotionally disturbed’.

She didn’t know much about the condition but said she’d give it a whirl.

“After a time at the school with Mum, the little boy was improving, so she spoke to other people she knew who had autistic children.

One by one, parents started bringing them to the school. Then in 1965, a group of parents got together which led to the founding of The National Autistic Society and their first school – and they asked Mum to be in charge.

“There was much less information and

understanding of the condition available then.

She went with a gut instinct a lot of the time and that seemed to work.

Mum was the sort who treated the children like human beings.

“I was a teenager at the time and it was a huge aspect of our lives.

I am an only child and I remember someone coming to interview Mum and making a joke about how I must have been spoiled… but I felt like I had 40 autistic brothers and sisters!

Some children lived in the house so were there every day.

“People said it would never be possible to educate people with autism, but Mum was the one who proved them wrong. She received an MBE in the ‘70s, which came as a big surprise to her. I remember Dad and I went to the Palace with her. I spent most of the time crying! I was so proud of her.”

Correction to Renaissance woman (Vol 48 - No 1): ‘prosocurposium’ is correctly called prosopagnosia.

good specialist educators, you have a winning approach. Applying for free school funding and setting up a school is an enormous commitment that takes over your life and pushes you down a rollercoaster of highs and lows. I think it’s easy to go into it lightly – because it’s the right thing to do, but seeing this through takes more than passion – you need resilience, nerves of steel, unfailing optimism, tenacity and most of all, a sense of humour! : I think it is important for parents to be fully informed about the choices they have available to them and for all options to be open. In terms of parental involvement within our school, we certainly encourage parents to generalise the learning and behavioural techniques used in the classroom, at home and run parent education sessions to help with this.

Also, from our point of view, to have parental involvement, and feedback, is really helpful. : Absolutely. Parents know their children better than anyone and a consistent approach between home and school will make a huge difference to our pupils’ success and progress. My advice to other parents in my situation is to take hold of the advantage, get the right team of professionals and families around you and accept that it’s going to be hard work. ●

ADVICE • NICE Quality Standard

The NICE Quality Standard: Understanding the basics

The need for a quality standard for autism was a key recommendation of the You Need To Know campaign run by The National Autistic Society in 2010.

Have you heard about the new NICE Quality Standard?

Are you wondering how it might affect you or how you might be able to make use of it? Daniel Leighton, Policy and Campaigns Officer at the NAS, spoke to Your Autism Magazine to explain.

BY ELEANOR WHEELER

A The new condition first stepcalled to getting the right support social communication is having timely access to diagnosis, so disorder has been added.

speeding up the process should have a significant impact on the lives of thousands of people with autism in England.

What is the NICE Quality Standard and where does it come from?

The National Institute for Health and Care Excellence (NICE) has published a new quality standard on autism, to help services address the considerable variation in diagnosis and treatment that currently exists across England and Wales.

What’s the background?

The need for a quality standard for autism was a key recommendation of the You Need To Know campaign run

by The National Autistic Society for improving child and adolescent mental health services (CAMHS) for children with autism. You can find out more about the campaign by visiting www.autism.org.uk/you-need-toknow. NAS director Mark Lever said, “people with autism have campaigned long and hard for their needs to be addressed when professionals are designing support and services: measuring progress against this standard will help to ensure that this happens.”

What does it include?

The NICE Quality Standard describes high-priority areas for improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements, derived from guidance developed by NICE and other sources.

The standard draws on a set of previously published guidelines on the recognition, referral, diagnosis and management of autism in children, young people and adults.

What are the key points of the standard?

The key measures set out in the quality standard to assess the quality of

YOUR AUTISM MAGAZINE

33

ADVICE • NICE QUALITY STANDARD

care for people with autism include: • diagnosis should happen within three months of referral to an autism team • whilst being diagnosed, people must be assessed for comorbid mental or physical health issues • those with a diagnosis should have a personalised plan, developed between the individual, parents/carers and the local autism team • everyone with autism should have a key worker to support delivery of the personalised plan • people with autism should not be prescribed medication to address core features of autism • those who develop behaviour that challenges should be assessed for possible triggers, including physical health conditions, mental health problems and environmental factors • people with autism and behaviour that challenges should not be offered antipsychotic medication for the behaviour unless it is being considered because other interventions are insufficient or cannot be delivered because of the severity of the behaviour.

What happens next to make sure the standard is followed?

Local councils and the NHS will need to look at whether services are meeting relevant areas of this standard.

The quality standard will be included in guidance for clinical commissioning groups, the consortium of local GPs responsible for purchasing health services. The standard can be used to establish key performance indicators when contracts are being tendered for and to incentivise provider performance.

This should help ensure the specific needs of people with autism

A faster diagnosis can make a real difference to children and adults living with autism

are taken in to account in the design and delivery of services.

What will the longer term impact look like?

The first step to getting the right support is having timely access to diagnosis, so speeding up the process should have a significant impact on the lives of thousands of people with autism in England, many of whom have waited or are waiting to obtain this critical milestone.

How can I make use of them?

The standard can be used by people with autism and their parents and carers as information about what high-quality care or services should include. ●

Although the NICE Quality Standard will primarily be used by GP consortia when purchasing health services, knowing the standard can help you stay informed about what these services should be providing for people with autism.

34

SUMMER 2014

Find out more NICE website For further information on the NICE Quality Standard for Autism, visit: www.nice.org. uk/newsroom/news/ NICEAutism QualityStandard HelpTackleReal VariationCare.jsp.

The National Autistic Society Our website has information sheets about diagnosis. Visit www.autism.org.uk/ diagnosisinfo.

ADVICE • WHAT TO DO ABOUT BITING

Biting: What to do about it As a behaviour that can cause a parent or carer a significant amount of embarrassment and even pain, biting often results in negative responses and grief. Our expert from The Autism Helpline explains what to do when it happens and gives strategies for how to adapt behaviour for the future.

B Y A N N A R AT T L I D G E

M

ORE OFTEN THAN not, the focus for what to do about biting rests on reactive strategies – or how to respond to biting – rather than how to manage and reduce the behaviour for the future.

Your response is a crucial aspect of managing the behaviour and needs to be planned and consistent. But proactive, preventative measures can be just as important in managing and reducing it. If your response to the behaviour does not address the cause of the biting, it may not be as effective.

Once a cause is identified, it is much easier to know how to support the person, or how best to adapt the environment and manage triggers. It is also important to appreciate that biting does not just affect children with autism and many adults on the spectrum also show this behaviour for a variety of reasons.

Why do individuals with autism bite?

There are many reasons for this behaviour, but the most common include:

• Medical/dental reasons.

For example, a person may bite if they are feeling pain due to toothache, jaw pain or head or ear aches.

• For those with sensory needs, biting can be an attempt for the individual to gain sensory input such as oral stimulation.

• Communication challenges.

Biting can be an extremely quick and effective way of letting others know that something is not right.

• Learned behaviour.

When a person bites someone else, often it will provoke an extreme response. A person may be more likely to bite again if they get a lot of attention from doing it (remember: negative attention is still attention).

• Frustration.

Biting can be an effective way of expressing a person’s frustration.

• Developmental stages.

A child may be biting if they are still going through the mouthing stage of their development.They might have missed this stage through medical issues or sensitivity when they were younger.

How do I respond to a bite?

It can be hard to know how to respond to biting, and often there will be quite an extreme response from other people around who may be witnessing the situation. Here are some ideas of how to respond: • Firstly, the most important thing to remember is to respond quickly and consistently to every biting incident.

An inconsistent approach may result in the individual becoming confused, stressed and frustrated.

• Whenever you are responding, always try to keep your response to a minimum and respond in a calm, monotone voice. Be clear and concise with what you are saying and make sure you get the individual’s attention beforehand, by saying their name at the start. For example:“Thomas, no biting”. Use a visual support such as a ‘no biting’ symbol to back up your spoken instruction.

• Redirect the individual to another appropriate activity and give them verbal praise and/or reward when they do it. For example,“Nicola, well done for playing well with your teddy”.

YOUR AUTISM MAGAZINE

37

Advice • What to do about biting

• If you have identified the reason for the biting, your response may be determined by the cause.

If it is due to communication difficulties, your response should involve encouraging the individual to use alternative forms of communication. This could be in the form of visual symbols or a communication book. For example, “Ellie, you need to use your symbols” or “point to what you want in the book”.

If the biting is due to frustration or distress, your response should encourage relaxation strategies or anger management techniques to help them calm down. It may also be useful to redirect them to a physical activity, such as a trampoline or a punch bag. Your response for this might be: “Alex, you need to use your trampoline” or “Freddie, you need to take three deep breaths”.

If the biting is because of the individual’s sensory issues, you may need to redirect them to an alternative sensory activity using an appropriate item such as a Chewy Tube™. Your response for this might be “Benita, use your Chewy Tube”. Support could also come from a symbol of their chewy tube.

Make sure you give the individual a bit of space following an incident of biting but stay close enough that you are ready to redirect them if necessary.

How can I manage and reduce this behaviour in the future?

With any repetitive behaviour, the first thing to check is that there are no underlying medical or dental causes.

It is a good idea to check with a GP or dentist that it is not due to any pain, such as toothache.

After these things have been ruled out, it’s a good idea to keep a behaviour diary of the biting. For this, you can use an ABC chart to make a note of what happened before the behaviour (Antecedent), details of the Behaviour itself and what happened after the behaviour (Consequence).

This can be a really useful way of

38

SUMMER 2014

identifying possible triggers for the behaviour. Once this has been determined, you can come up with strategies that are addressing the actual cause of the biting.

• I s the trigger/function to do with communication?

If this is the case, you should aim to support the child by swapping the biting behaviour for an alternative communication response. For example, if a child is biting a teacher because they want a particular toy, the child could be supported to use visual supports or makaton to request the toy. A Social Story™ (thegraycenter.org/social-stories) can also be useful when helping develop a person’s understanding of a situation and introduce alternative responses. It could also help them to understand why biting is not appropriate.

• I s the trigger/function to do with environment?

If the environment is too much for the person to cope with, try to make changes in order to create more supportive surroundings for them. For example, see if you can add more structure to the person’s routine by giving them a visual timetable showing them what will be happening. Also, try to keep things as predictable as possible, reduce unpleasant stimuli (loud noise/bright lights) and reduce the amount of people in the same space.

• I s the trigger/function to do with sensory input?

If the person is biting in an attempt to gain sensory input, it will benefit them to plan specific times into the day when they can use alternative, more appropriate ways of meeting their sensory needs. This could be providing the individual with a Chewy Tube™ or alternative sensory toy at a particular time.

• I s the trigger/function to do with anxieties?

If biting is the result of difficulties with managing emotions or releasing frustration, stress or anxiety, then it is important to support the individual to learn more appropriate

The causes of biting can be varied and an effective response to the behaviour must be driven by the reasons behind it

ways of expressing these feelings.

First, it is useful for the individual to be able to identify in themselves the signs of anxiety (eg sweaty palms, fast heart rate, upset stomach etc) and then put alternative, more appropriate strategies in place to help their body to feel better (eg deep breathing, calming activities, walking or jumping on a trampoline). The Incredible 5-Point Scale (www.5pointscale.com) can help individuals to understand and control their emotional reactions to triggers.

With all of these strategies, it is really important to reinforce any occasion where the person is showing appropriate behaviour. You should reward the person immediately after they have done this. Note that appropriate behaviour can be simply not biting, and can be rewarded with verbal praise, attention, objects, activities or food. It is also important to name what behaviour you are rewarding, for example: “Good listening, Jason”.

If you see a lot of biting from an individual, it may be useful to try to

provide extra supervision for them, so that it is easier to anticipate and prevent further biting from happening and to be ready to intervene and redirect if necessary.

What additional support is available?

If the biting behaviour keeps happening and is causing significant disruption or risk to the individual themselves and others, then it may

be useful to seek specialist help from professionals such as: • a psychologist who has an understanding of the condition and behaviour management. You may need to speak to your GP about referring you to a suitable service.

• an occupational therapist who is experienced in autism. They can assess an individual’s sensory needs and suggest possible strategies and therapy that can help. ●

Biting: the reasons behind it ■ Communication

difficulties ■ Learned behaviour – a positive outcome for the person in the past ■ Frustration or distress ■ Attempting to gain sensory input ■ Toothache or jaw pain ■ A developmental stage

How to respond ■ Rule out medical and

Find out more The Autism Services Directory: www.autism.org.uk/directory can be used to search for specialist services including occupational therapists.

The Challenging Behaviour Foundation: www.thecbf.org.uk

offers more information and support around challenging behaviour.

The National Autistic Society If you would like to talk about any of the issues mentioned in this article, call our Autism Helpline on 0808 800 4104.

Useful resources It can get better: Dealing with common behaviour problems in young children with autism

by Paul Dickinson and Liz Hannah Autism: understanding and managing anger by Andrew Powell

dental causes ■ Keep a behaviour diary ■ Improve communication ■ Modify the environment ■ Increase sensory input ■ Use anger management/ relaxation training ■ Supervise and redirect ■ Reinforce appropriate behaviour ■ Respond quickly and consistently to the biting behaviour

YOUR AUTISM MAGAZINE

39

Carla Manini Rowden works for the Education Rights Service

Education Rights Service

How the NAS can help you The Education Rights Service receives over 2,000 calls each year, provides around 200 hours of free education advice each month and, since launching in 2000, has supported over 24,000 families. Carla Manini Rowden, Senior Education Rights Coordinator at the NAS, explains why the service has proved to be a lifeline for families.

W

hat is the Education Rights Service?

We offer impartial information and advice on education rights and entitlements for parents and carers of pre-school and school-age children with autism.

What kind of advice do you provide?

We can help those who need general information or advice on specific topics such as getting extra help in school, assessments, education plans, reviews or school transport. We can also explain what should happen at different stages of a child’s education and what parents can do if they have any concerns.

Why do you think this service has proved so popular?

Topics like education law can be complex and can change quite dramatically in each country, like the upcoming special educational needs

reforms in England (for a full analysis of these changes, see pages 14-17 of the Education Supplement). We have specialist staff and volunteers across England, Wales, Northern Ireland and Scotland who can help explain these things. Families in England who would like more information on the upcoming changes can also visit www.autism.org.uk/senreforms.

Do you provide advice on complaints?

Yes, our Tribunal Support Line can explain the complaints and appeals processes and support parents if they are making an appeal to an educational tribunal.

How do people access the service?

We offer advice through our Education Advice Line and Tribunal Support Line.

Email us, or visit the NAS website. ● Contact the Education Rights Service by calling 0808 800 4102 (please select the type of advice you require and leave a message).

Calls are free from landlines and most mobiles. Alternatively, email educationrights@nas.org.uk or visit www.autism.org.uk/educationrights.

You will usually hear from one of our specialist volunteers within a few days, although this can take longer at busy times.

“Education law can be complex and can change quite dramatically in each country, like the upcoming special educational needs reforms in England”

Did you know?

The service is funded by NAS supporters. Without that help, it would be unable to continue.

Visit www.autism.org.uk/getinvolved to find out how you can donate or fundraise to help the NAS continue its work.

YOUR AUTISM MAGAZINE

41

RESOURCES

Teaching Students With Classic Autism Functional Social Skills in Natural Settings AUTHOR: D. E.

Bahme and S. J. Sheridan PUBLISHER: Autism Asperger Publishing Company PRICE: ÂŁ19.50 ($25) VERDICT: A helpful tool to help professionals deliver a programme that promotes evidencebased practice with the aim of relieving social difficulties for people with autism.

THIS PROGRAMME CAN BE used by professionals working with people with autism for assessment as well as for planning differentiated, evidence-based lesson plans. Each section is clear and comprehensive, allowing the person using it to take a structured approach to delivery from beginning to end.

Originally written for an American audience, the programme can be used alone or can complement goals within the P Levels or the National Curriculum.

Focusing on fundamental skills, such as waiting, through to some of the more complex issues such as bullying, the programme offers engaging and functional opportunities to develop social skills. The detailed yet user friendly assessment encompasses a broad range of social skills, yielding a Visual Social Skills Profile to help identify and prioritise skills to be developed.

The book outlines evidence-based communicative and teaching strategies, referencing their use within the lesson plans, to support teaching and opportunities to encourage interaction skills. If further differentiation is needed, then this is easily achievable thanks to the clearly outlined process and practices involved.

Parents are encouraged to be a part of the programme with practical suggestions which explain how they can help extend the programme beyond school. This book is a helpful tool for supporting professionals to relieve some of the social difficulties that people with autism may have.

Reviewed by Ruth Burtonwood. Ruth is a Speech and Language Therapist at NAS Robert Ogden School.

To order books recommended by the NAS, go to www.autism.org.uk/amazon

Our six favourite‌ online videos about autism

1

WHAT IS AUTISM? Created by the NAS in 2013, this awarenessraising tool is a great introduction to autism for people who know very little about it. Easy to share on social media, it aims to help improve general understanding of the condition. www.youtube.com/ watch?v=d4G0HTIUBlI

44

SUMMER 2014

2

MY AUTISM AND ME: A NEWSROUND SPECIAL Made by the BBC in 2011, this short documentary is presented by Rosie who has Asperger syndrome, and features Lenny, Ben and Tony, who all have a form of autism. www.youtube.com/ watch?v=ejpWWP1HNGQ

3

TEMPLE GRANDIN: THE WORLD NEEDS ALL TYPES OF MIND Renowned author and speaker Temple Grandin talks about her experiences of learning and working with Asperger syndrome and explains how to prepare young people with autism for work. www.youtube.com/ watch?v=fn_9f5x0f1Q

RESOURCES

From Like to Love for Young People with Asperger’s Syndrome

Visual Bridges for Special Learners:

(Autism Spectrum Disorder)

A Complete Resource of 32 Differentiated Learning Activities for People with Moderate Learning and Communication Disabilities

AUTHOR: Tony Attwood and Michelle Garnett

AUTHOR: Julia Moor

PUBLISHER: Jessica Kingsley Publishers

PUBLISHER: Jessica Kingsley Publishers

PRICE: £12.99

PRICE: £39.99

VERDICT: A good, basic guide for parents wanting

to develop their own specific social skills programme or group.

VERDICT: A versatile and flexible resource for professionals working with people with autism which can be adapted for use in a variety of settings.

THIS BOOK attempts to develop a social skills programme for young people with Asperger’s syndrome, which aims to enable them to understand and show affection. The book is divided into three sections: part one covers some basic theory on autism and cognitive behaviour therapy; part two looks at how to run the programme and part three includes some worksheets.

Designed for parents, it offers a structured outline, but still allows for some flexibility. The worksheets are accessible and there is a clear progression through the programme with pre- and post evaluation assessments, although parents may find it difficult to deliver this in a one-to-one session due to the need for a highly structured approach.

Reviewed by Frank Slokan, Senior Behaviour Co-ordinator at NAS Daldorch House School.

THIS RESOURCE IS TARGETED at people with learning and communication difficulties, including autism, and includes 32 visual learning sessions and worksheets (both monotone and colour versions) covering a variety of topics.

Many of the individual activities are traditional ones such as Kim’s game for visual memory, bingo activities and even pass-the-parcel. It can be difficult to see how these apply to real-life activities, but suggestions are given for contextualisation making it a versatile resource.

It also covers how activities can be differentiated and developed for uneven profiles whilst retaining the possibility for group work. Altogether, it is a very useful resource if you are prepared to do some adaptations.

Reviewed by Linda Nevin-Drummond.

4

A WINDOW INTO OUR WORLD Made by our Young Campaigners in 2013 (with a bit of help from professionals at Chocolate Films), this short stop-motion video gives an insight into the causes of anxiety and stress for young people living with autism. www.youtube.com/ watch?v=sBdLqyi6Y3Y

5

BOY IN THE BUBBLE A short, simple animation narrated by four-year-old Malachy, which emphasizes that it is possible to take part in the world, even if you feel excluded on account of having autism. www.senassist.com/video3.html

6

THE AUTISM PUZZLE This onehour BBC documentary made in 2002/3 features Michael Baron, co-founder of The National Autistic Society, and his son, Timothy.

A mixture of personal history and information about autism, it also looks at research and interviews experts on the subject. vimeo.com/20748434

YOUR AUTISM MAGAZINE

45

HOYLANDS HOUSE

Alex is a particular fan of the raspberry jam

We’re horticulturists and jam-makers!

The ‘Growing for Success’ project in South Yorkshire is providing the young people who live in local NAS services with the chance to get involved in cultivating and creating produce in whatever way they can.

S

INCE SEPTEMBER of last year, the young adults at Hoylands House, a National Autistic Society residential service near Barnsley, have been helping to transform their grounds into a hive of activity. With the help and support of the staff who work there – as well as neighbours and local people – everyone at Hoylands has been working together to improve the productivity of the land, providing opportunities for growing plants and fruit and making foodstuffs from the results.

Activities have included installing a poly tunnel for cultivating plants, creating a vegetable plot for growing ingredients for making chutneys, and expanding the orchard to grow more fruit for jam-making. Hoylands are also converting an old garage into a farm and arts + crafts shop, and they are currently in the process of getting planning permission.

Jennifer Woodcock who works at the service said: “Right now we are growing herbs, vegetables, perennials, and have just sowed one of the hottest chillies in the world to sell in the shop! We will also be providing a bespoke hanging basket service to the local community”.

Some of the residents pick the fruit and some wash out the jam jars, while others get more involved in the culinary side of things.

Practitioner Laleh Audin said: “It’s nice to see how the young adults we support can take part in the project no matter how small their contribution.”

For the last couple of months, the jam recipes have been undergoing testing by residents. Alex West, one of the young adults living at Hoylands House, judged that “raspberry jam is the best”. Following this, the jam has been dubbed ‘Mr West’s Raspberry Jam’.

Hoylands has been joined by another NAS service, Field View near Goole, to take part in the ‘Growing for Success’ project. With the help of horticulturist Anthony Walker, Field View planted an orchard and soft fruit growing area for making jam, and are also going to be growing plants to help stock the shop at Hoylands. Staff and residents from both services recently joined forces for a big marmalade session, which it is hoped will be repeated in future.

Laleh Audin said: “This project will be a fantastic opportunity for the young adults we support to have hands on work experience, horticultural skills and to be working in the local community.” ●

If you have autism or know someone with autism who is doing something amazing, we’d love to hear about it. Email YourAutismMag@autism.org.uk.

46

SUMMER 2014