Autism
The magazine of the National Autistic Society | Winter 2013
Rainbow nation
Personal Independence Payment
What the new benefit means to you
Autism spectrum myths and reality
“The only
Also inside
expert on my condition is me!
• Autism and relationships • Holidays designed for you • Advice for siblings
”
A teenager tells his story
The way we are Real-life stories from our largest survey ever
Services for professionals FEATURE Teen time
Do you know someone who works with people with autism? We can provide practical support for people working in education, health, social care and other sectors.
Autism Accreditation
AUTISM ACCREDITATION
An autism-specific quality assurance programme for over 300 organisations throughout the UK and across the globe. www.autism.org.uk/accreditation
Conferences
Our conferences have a reputation for excellence, providing up-to-the-minute information, world-class speakers and opportunities to share best practice. www.autism.org.uk/conferences
Information centre
A specialist enquiry service and access to fact sheets and reading lists online. www.autism.org.uk/infocentre
Network Autism
A free online international community where autism professionals connect. Take part in discussions and groups, read the latest research and case studies. www.networkautism.org.uk
Online shop
An extensive range of tried, tested and trusted autism-related resources, supplying customers all over the world. www.autism.org.uk/shop
Training and consultancy We offer a diverse range of training and consultancy options based on our experience in supporting both children and adults with autism. www.autism.org.uk/training
2
Autism
www.autism.org.uk/professionals
WELCOME
Welcome to your new look Communication, the membership magazine of The National Autistic Society.
NAS Head Office The National Autistic Society, 393 City Road, London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk Editor Chris Lean Writers Zoey Daw, Josie O’Donoghue Design johnclarksondesign.co.uk Front cover © Steve Hickey Advertising Ten Alps Publishing One New Oxford Street, London WC1A 1NU Tel: 020 7878 2367 Fax: 020 7379 7155 parminder.sangha@ tenalps.com www.tenalps.com Subscriptions Only available to members of the NAS. Contact: Supporter Care Team, The National Autistic Society, 393 City Road, London EC1V 1NG. Tel: 0808 800 1050. supportercare@nas.org.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. © Communication 2013 Spring, Vol 47, No 1. The National Autistic Society. ISSN 0045 7663 Disclaimer: Please note that the views expressed in Communication 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. Communication magazine is printed on a Forest Stewardship Council accredited paper, using vegetable-based inks and low VOC (volatile organic compounds) printing processes, by Newnorth, a company accredited with the ISO 14001 environmental standard.
D
id you know that the NAS has established a quality standard called Autism Accreditation for services that support people with autism? Over 400 schools, hospitals and services around the UK are already part of the scheme. This is just one of the ways in which we’re spreading good practice and helping to make sure that people with autism and their families get the understanding and support they deserve. There’s a long way to go before every professional service around the country meets the specific needs of people with autism, but our feature on page 24 highlights just one example of how real change can happen when autism specialists and other professionals work together. This issue we also have some advice for adults with autism who are suffering from anxiety and an interview with Jennifer O’Toole, the American mum who discovered her whole family had Asperger syndrome (including herself!) and now writes guides for other families with kids on the autism spectrum.
Enjoy the magazine! Chris Lean Editor
Contents: Spring 2013
04 News 10 Diary 13 Reader survey 2012 results 15 Readers to the rescue 16 My story: Patricia, David and Richard 20 Feature Technology and autism 24 Feature: The change makers 28 Interview: Jennifer O’Toole 33 Feature: Treasuring memories 34 Feature: Amazing days for autism 37 Practical advice: Anxiety and autism 41 Practical advice: Mouth care 44 Reviews 46 Viewpoint: Christopher Beaver Autism
3
NEWS
News Government report on Winterbourne view published The National Autistic Society has welcomed the Government’s final report on the abuse scandal at the Winterbourne View hospital, which was uncovered by Panorama last year. More than a third of patients at Winterbourne View had a diagnosis of autism and we have been campaigning to end poor care and abuse at large, institutional-style services like the hospital. As part of this campaign, we have been working with the Department of Health to develop its plan of action and, as a result, there is a clear focus on improving services for adults with autism. A report, entitled ‘Transforming Care’ commits the Government to an 18-month programme of action to transform services. It was published alongside a Concordat, which we have signed, and which sets out specific actions that individual partners must take. The Government has also published examples of good practice in supporting people with complex needs and used this opportunity to highlight the excellent support provided by staff at Pinecroft,
1
3
of Winterbourne View patients had a diagnosis of autism one of our own residential services near Bristol. The actions set out in the report and in the Concordat aim to reduce the number of people who are sent to assessment and treatment units like Winterbourne View, and ensure that as many people as possible are supported in community-based settings. This person-centred, community focus is in line with the approach and ethos within our own services. We are looking at all the actions we can take to play our part in preventing another Winterbourne View.
Worried about the service where someone you know is living? Contact:
England Care Quality
Commission: 03000 616 161 Scotland Scottish Commission for the Regulation of Care: 0845 603 0890 Wales Care and Social Services Inspectorate for Wales: 01443 848 450 Northern Ireland The Regulation and Quality Improvement Authority: 02890
Rudy Simone to speak at NAS Conference
Rudy Simone 4
Autism
Rudy Simone, the world-famous author and comedienne, has been confirmed as the keynote speaker at our Professional Conference, to be held in Harrogate on 5-6 March. Rudy is a truly inspirational speaker who uses entertaining stories and personal experiences to illustrate coping strategies and how people with autism can celebrate their abilities and, doing so, become more empowered.
We’ll also be holding one of our special ‘Evening with…’ events with Rudy Simone at the King’s House Conference Centre, Manchester, on 7 March. As well as hearing Rudy speak, audience members will have the opportunity to ask Rudy questions about herself and to seek her advice and opinions, plus buy signed copies of her books. NAS members can attend the event on 7 March at a special rate of £14 + VAT. If you book two places, you can get a third place for half price. Book online at www.autism.org.uk/ conferences/rudysimone
NEWS
From the Chair
Pictured left to right: Marianne Swannell, John Swannell, Dr Christopher Mason MBE (already a Vice President), Lady Astor, Rebecca Daley, Lord Don Touhig, John Bercow MP, Jane Asher, Peter Cullum CBE, Mark Lever, Simon Cullum.
NAS announces new Vice Presidents Speaker of the House of Commons, the Rt Hon John Bercow MP, hosted a reception in December to celebrate our 50th birthday and welcome our new Vice Presidents, who will raise awareness of autism and our work. Held at Speaker’s House in Parliament, the reception also celebrated the hard work of our branch officers, fundraisers and supporters. John Bercow said: “Sally and I are delighted. All individuals with autism should have the opportunity to live the life they choose, which is why we do all we can to support better awareness of the condition.” NAS President, Jane Asher, said: “I’m delighted that so many key figures have
accepted my invitation to become Vice Presidents. We’ve come on a tremendous journey over the years, but we remain very aware that for people with autism and their families, there’s still a long way to go.” Vice Presidents include John and Sally Bercow, who have a son with autism; artist David Downes, who has high-functioning autism, and photographer John Swannell and his wife Marianne, who have a son with autism. Others include former Trustees, leading autism researchers and parliamentarians. Read more about our new Vice Presidents at www.autism.org.uk/ vicepresidents
NAS welcomes report on SEN reforms The NAS has welcomed a report from Westminster’s Education Select Committee on proposed special educational needs (SEN) legislation in England. We’re working to ensure that when the legislation is introduced, it includes the committee’s recommendations, especially parental rights and co-operation between local authorities and health. We had expressed concerns that the draft legislation does not include some of the parental rights that exist in the current system. This includes the right to request an Education, Health and Care
We’re campaigning to ensure new SEN laws meet the needs of pupils
Plan (EHCP) and the timescales in which councils have to respond to parental requests. The committee recommended that current rights for parents be carried over to the new legislation, and also made other recommendations that we support.
S
exual development is a wideranging process linked to the basic human needs of being liked and accepted, showing, giving and receiving affection, feeling valued and attractive, and sharing thoughts and feelings. It is not just physical functioning; it also relates to sexual knowledge, beliefs, attitudes and values. reparing for puberty is just one of the many areas of social and emotional understanding that will need to be taught to a person with an autism spectrum disorder (ASD) during their life, if they are going to have successful and rewarding experiences. Building social relationships by making friends and establishing intimate partners is a key developmental life stage for young adults, so all children approaching puberty and adolescence will benefit from information and advice about sexual development and relationships. It is even more important for young people with an ASD who may not learn incidentally or from their peer group. They may approach other people in an inappropriate physical or verbal manner, misread subtle social cues or body language and behaviours, or not understand privacy. We should recognise that sexual development and curiosity is a normal developmental process. Even for a young person with complex learning needs and an ASD, many will have a need for relationships and intimacy with others. How would you manage your sexuality if you had no sex education, could not talk to anyone and did not have access to books or other written or visual material? Some young people will also be gay or asexual and value some support and the chance to ask questions.
For more information go to: http:// nas-education-update.blogspot.co.uk
Autism
5
NEWS
Personal Independence Payment: an update The Government has published further details about the replacement of Disability Living Allowance (DLA) with Personal Independence Payment (PIP). PIP is the new benefit for disabled people aged 16 to 64. Following a public consultation, which the NAS fed into, the criteria for PIP has been amended and appears to better reflect the needs of people with autism. The first claims to PIP will be made in April 2013, in a test area in the North of England, and from June 2013 new claims to PIP will be taken in all other areas. From October 2013, people currently claiming DLA will be invited to claim PIP, but this will be a staged process over four years. We have welcomed this staged process, as it gives the Government more time to learn from early delivery of the new benefit. We will be working with the Department for Work and Pensions and the appointed assessment providers (Atos and Capita) to ensure that the assessment process does not disadvantage people with autism.
85%
PIP will replace DLA for disabled people aged 16 to 64.
For more information on PIP go to www.dwp.gov.uk/policy/disability/ personal-independence-payment If you have any questions about how changes to benefits may affect you, call our Autism Helpline on 0808 800 4104.
Autism
For more information visit www. autismprofessionalsawards.org.uk
London to Brussels cycle challenge This June, you can join us as we cycle from London to Brussels to raise funds for the NAS. You’ll get to ride through the English countryside, before crossing the channel and continuing the journey via Bruges, the ‘Venice of the North’. After three days we’ll arrive in Brussels and celebrate our journey.
Find out more at www.autism.org.uk/londontobrussels
St George Healthcare Group donates £1,920
R ya n ’ s R a p
6
Autism Professionals Awards shortlist unveiled The shortlist of nominees for our first ever Autism Professionals Awards has been revealed. You can read all about the awards and the nominees in the special supplement included with this issue of Communication. The awards ceremony will be hosted by Jane Asher and Kathy Lette and takes place on 5 March at the Majestic Hotel, Manchester.
of autistic children saw colours with greater intensity than neurotypical children.
Seventeen-year-old Ryan Larmour from Northern Ireland has produced a rap video called W.A.D – We’re All Different to raise awareness of autism. Ryan is selling the DVD to raise money for NAS Northern Ireland. Diagnosed with Asperger syndrome when he was eight, Ryan struggled at school but 18 months ago he started listening to rap music. His dad, Raymond, said: “We’re so happy with the impact that music has had. It’s a way in which Ryan can express how he feels and connect with people.” Ryan was helped by volunteer Emma McKeown, who he met through the Mid Ulster School of Music.
Roundup
To buy the DVD, contact NAS Northern Ireland on 0289 068 7066 or email northern. ireland@nas.org.uk Watch Ryan’s video at www. youtube. com/user/ Ryan1015.
Ryan has been supported by an NAS social group.
St George Healthcare Group, a leading provider in care and rehabilitation for people with autism, brain injuries and mental health, has donated £1,920 to the NAS. In October, the St George Healthcare Group organised a conference on the management of autism, in aid of the NAS. It was attended by a number of key speakers who are renowned for their expertise in the field of autism.
NEWS
Autism-friendly Lion King performance
The Autism Show will be visiting London and Manchester this year
Autism Show goes north Following two successful years in London, the Autism Show, in association with the NAS, will also be coming to EventCity, Manchester, in 2013. The Manchester event will mirror the London show, with high-profile speakers, one-to-one advice clinics, interactive features and leading supplie.rs. Current exhibitors include Acorn Care, Safespaces, iMap Centre, Tough Furniture, Sense Toys, B Active Brain Solutions, Widgit and Witherslack Group. Carol Povey, Director of the NAS Centre for Autism, said: “The Autism
Show is an opportunity for people to share knowledge and experience, and to keep up to date with developments. I’m delighted that this year the Autism Show is going to Manchester, giving even more people the opportunity to attend”.
Now in its 14th year at the Lyceum Theatre, The Lion King is an has captured the imaginations of audiences all over the world. It uses theatrical magic to tell the story of Simba’s epic journey to fulfil his destiny as King of the Pridelands. On 14 April, The Lion King performance will be suitable for people with autism. Working closely with the NAS to create a friendly and supportive environment with trained staff on hand in dedicated quiet and activity areas should anyone need to leave their seats. Tickets for this special performance are £39.50. For information and tickets visit www.lionkingautismfriendly.co.uk
For information and to buy tickets, visit www.autismshow.co.uk. NAS members receive a ticket discount by quoting NAS3 when booking. London’s ExCeL Centre, 14–15 June Manchester’s EventCity, 28-29 June
“Maths is as rich, inspiring and human as literature. Prime numbers can be poetic. I want to break down the barrier between fiction and non-fiction.” Daniel Tammet has Asperger’s syndrome and synaesthesia. His third book, Thinking in Numbers, explores “the science of imagination”.
Count us in campaign launches in Scotland
Count us in: it pays to listen Accept difference. Not indiffe
rence.
NAS Scotland launched its new campaign, Count us in, on 30 January. The Scottish Government’s Autism Strategy for Scotland is targeting £13.4 million to better support people with autism and everyone involved wants to make the most of the opportunities this presents. The campaign report, Count us in: it pays to listen strongly advocates partnership working between Government, local authorities, support organisations and, crucially, people with autism to bring about life-enhancing, cost-effective autism support.
Dr Robert Moffat, National Director of NAS Scotland, said: “Regardless of where someone is on the autism spectrum, the right help at the right time is of fundamental importance. Our report demonstrates clearly how we can achieve this. We can communicate with people who have autism and ask them what they think will improve the quality of their lives and how they believe available funds should be spent to achieve this.” Find out more and get involved at www.autism.org.uk/countusin
Autism
7
Do something amazing for autism! FEATURE Teen time
Put a spring in your step by joining one of our running events! Reading Half Marathon 17 March 2013
Brighton Marathon 14 April 2013
BUPA London 10k 27 May 2013
Already have a place? Join our running team to receive running tips, help with your fundraising as well as an NAS running vest! To sign up or for more information please email events@nas.org.uk, call 0808 800 1050 or fill in our online form.
www.autism.org.uk/amazingdays
Accept difference. Not indifference. 8
Autism
Registered as a charity in England and Wales (269425) and in Scotland (SC039427)
Communication Spring | 09 8202013 150113
NEWS
Roundup Scottish alert card wins award NAS Scotland has won silver in the Chartered Institute of Public Relations (CIPR) PRide Awards for its Autism Alert card campaign. The cards address the challenges faced by people with autism who are victims of crime and accidents and ensure that they’re quickly identified by police and emergency services. NAS Scotland is also campaigning for a centralised card system, with the support of Mark McDonald MSP.
Radlett Principal retires after 24 years Lynda Perry, Principal at Radlett Lodge School in Hertfordshire, recently retired. Lynda joined the school in 1988 and was appointed Principal in 1997. She has seen the school through its development from secondary education to primary and post-16 provision. Her strong sense of responsibility and her ability to motivate staff has led Radlett Lodge to achieve outstanding Ofsted and Autism Accreditation reports.
Assembly receives Autism Access Award The Northern Ireland Assembly has received our very first Autism Access Award. The initiative was part of a pilot project, run in conjunction with the Northern Ireland Assembly Commission. Improvements include clearer signage, a quiet room, staff autism awareness training and a section on its website to help anyone with autism prepare for their visit.
Ryan has been supported by an NAS social group.
Robyn meets ‘Curious Incident’ West End star The National Theatre production of breathing living bloke. I had to keep this The Curious Incident of the Dog in the in my mind, as well as all the observations Night-Time is transferring to the West and research about autism.” End’s Apollo theatre on 1 March 2013. There is a scene in the play when NAS Ambassador Robyn Steward spoke Christopher is at a busy Paddington to actor Luke Treadaway, who plays the Station, and gets very distressed, confused lead character Christopher – a teenager and anxious. I asked Luke how he who has autism – about his experience in managed to get into the head of someone the role. who has autism. Starring as Christopher involved “I’ve just come from Christmas shopping on a steep learning curve for 28-year-old Oxford Street, and after ten years of living Luke Treadaway. He told me in London I’m used to he started by doing a lot of zipping in and out of research. crowds. However, since “It’s like being “I visited three schools and being in the play, when inside the most spoke to young people and their random computer I get off at Waterloo parents. I was keen to meet tube station every game ever.” young people on the spectrum morning to come to and chat to them about school, rehearsals, Christopher life and football – whatever interested them. is in my head – I start to see the madness “I remember sitting in one sixth form and randomness through his eyes. It’s this common room and a couple of students that I tried to capture in the Paddington had read the book and wanted to tell me Station scene – it’s like being inside the most about their lives and what the common random computer game ever.” misconceptions are about people with It was great to meet Luke and get an autism. They told me about the ways they insight into the play. I can’t wait to see it felt autism had been successfully played again. Its ability to educate people about and not played in films, on TV and on autism, whilst being entertaining, is one stage, and they gave me advice about what of its strengths and I would recommend it I must and mustn’t do.” to everyone. Luke was keen to show that there is more to Christopher than his disability: Buy tickets at www.nationaltheatre.org.uk “Christopher’s a boy, essentially. He’s a
Autism
9
imone S y r a range d u R h it vening w AnleeDIARY peop ester rch Care and e,, Manch e h ndMroam t r sy7 n o e c bility onferen a is D g in taff andth International C n r ith Lea w 2 1 s r e d n e f f ons. tment of O
y
Diary
na r s i University m a e ri b s 7 m t 6 u r 3 h r fo 3 rt s1p1 po k 9u 15ill ekn/eTsem 1 iv rt e l:s0is -5 April, No s s s 4s A y place in l .u g r e .o rers take a s opyoe a a c F d n d rt f @ n o a e r nc e c @inaNrsAfoSr pparents, providing strategies an la / p rk s o e ail: confere the/cw c n m e m E r e s fe ur UK s und the .org.uk on , locaOlotio s aroC m onTB is t tin a u c topics. .a f w o e w w rang 21 March Family a n o e ic support adv nger for s. seminars in ss anag l sgkaill Trea
26 February, B
Email help.pr Tel: 07425 62 www.autism
rganisationa O s r a n i eb the workpanlad Acxecis Education W s M
es
, Invern Our seminars for parents and carers ary 22 Febru ess the UK, rn e v In take placeM inalocations around , rch 12 m utais providing strategies anddadvice on range ty goau ie c in o S n r c a ti t s s ti h r Au nn topics. of oCneangor Ue sdeTB ri etio March, loofca
skill onal a s 26 February, B ce The Naittiment hav28 e produced Managing other autism as.org.uk ndanger
n rs a Recru ammye@ elp teach22eFebruary, .prosgrth h Inverness e elp to h s.org.uk il rs na a a ie g@ m in g in E in b te ra a t.t en tr 592 m s 4 oy 2 d pl 6 n em l a 5 ai online we 12 March, Inverness 2 The SCERTS model: helping Em ls 4 /h. elp! k Tel: 07 n the too ly g.u r e rv a .o ti le c m ls e s a children to become competent ff ti n e u io .a swmw autism utiw50 rofess 0n 77 pProspects h a74 02 it04 l: Understanding w Te x, iety in communicators re d il e h c om portProspects, runs 26 c s to social ct e pe b February, Bangor os pr k/ .u d to supservice, 7 February, 6.30–7.30pm rg n .o eeemployment m e is nOur r ut r ww.a lswfo child
s,
C
elping hhelp.programme@nas.org.uk l: e d o Educational provision and m S T icators BC n592 teaching approaches for children 624 The SCER ocial com07425 mu with PDA s t www.autism.org.uk/help! pteiotnealns com 20 March, 6.30–7.30pm 0pm a .3ASD 7 – 0 hes .3 rgaenbisru 6 acOfsted , O o ry r Managing employees with an a p p lace a F p g 7 k r The new inspection in o h w e London C eac t 5th March, d n a ation TB c n framework lo , io h is rc vrg.uk 8 Ma Manchester nal pro 62March, 11 April, 6.30–7.30pm g@nas.o in ucploaymtio in d a E tr t. A en D P h m it Communication skills for the e il Ema 0 en w ts Promoting inclusion, preventing 45r ch04il7d workplace pec f l: 0r20 77 13 eo T bullying .uk/pros7.30pm g r .o 0 n m 2 s – e uti hTBC 0 7 March, c .3 n 6 w.alocation , w e r w rc e a f k or 16 May, 6.30–7.30pm on 20 M w e m a r f n io Dealing with anxiety in the inspect Find out more and register to workplace new Ofsted e take part at www.autism.org.uk/ h T 14 March, location TBC d n m p a 0 e g .3 n 7 n o i – 6.30 S11im rtaining bullyinwebinars g T April,skills h RudyAssertiveness for the Conferences n y e c Senso sr n, prev consultan workplace io s lu c in 3 g 1 in 0 t Professional Conference 2013 2 o d 21 March, location TBC n m e a Pro ons renc thpemCa5-6re March, Harrogate k/webinars21 Febr considerati kil of audiences, training iv courses nesfors asrange e t r e s s Aincluding e autism or Asperger people placwith e workemployers, C th syndrome, staff and n TBuniversity , locatio 1 March organisations. ls for 2employment kil
ces
Trai con
ofor–n7the .30 Training c Sensoryww.a n .30 ism.org.u and 6e t e , r u y y Organisational skills e a t f i n l M o i n d 6 n b o o 1 w L a , t C ry s i revening e brua a2rt1 FaeSimone nal monworkplace consultancy e pRudy nndinreggisDAn r to takwith a e te L ttingham o N h , t udy Si h i rc d a w M n a 7 March, Manchester 21 sFinhdlocation 28 r March, emaore oCuatrTBC Sensory porting upconsiderations Offende on t e nding and s ability
Under peopl Understanding and supporting
21 February, London ndersta 12th International U Conference y enecresemployment.training@nas.org.uk g Dis it riv n e i f sm n n r n auti21 o U a h it e w brCia s with L020 7704 7450 le March, Nottingham p 7 on the Care and Treatment o 6 e 3 p 3 1 1 9 5 1 1 n 0 o d l: n of Offenders with Learning e o L T ender , h / k Marc 7
1 y rg.u www.autism.org.uk/prospects 336 erssit.o iva Disability f @ 13 o 20 ondon r Unn g 15 911 p rin 1 Sp S 0 n A io at l: N ic e 27 March, L un @ people with fm/m Co | ros 10 uk /fTe pe c . r 4-5 April, Northumbria University n S g e r A iouautism r o N . s /cones / @ ehavLondon bMarch, g in d 1 uak n c ta n rs e e r d e n f U n o
c
rs
s
tion Educa is c x A ur ty and ne-ho c Socie a series of o autism ther ced produ chers and o ey a gies th e t e t a r t s help ely. nd e ffectiv ools a n the t ith autism e becom o t n w e n r e childr child
21 Marc
1 March 27 Marc
er March, London conference@nas.org.ukarch, Manchest27 11 M 0115 911 3367 CCH new behaviour on to TEAUnderstanding ti c u d o tr In www.autism.org.uk/conferences nd11 h, Lo on March, Manchester @NASprof 11-12 Marc
l Introduction to TEACCH n and socia atio ic n u m m o C 11-12 March, London interaction ster
Under
11 Marc is Education c x A d n a ty ie c o S stic of one-hour Webinars s ie r e s The National Autistic Society and Axcis anche a d Communication and social e Introd 14 March, M m s produc ti u a r w e Education Recruitment have produced a e th interaction o n d le n p a o g e s r p n i e rting 14 March,hManchester Supptoohelp helpel:tehealcpuh o ators ategies they series of one-hour online webinars 11-12 M roug nicd S mod comm u tr teachers and other autism professionals s h a tism th it 19 March, Nottingham ts w n n a s e m ls e s l o s h e a to i e rsnocth rotiavcely. learn the tools and strategiessthey pc ial ctoare ass pe ocneed aff e g m m p n s i 0 ti m u 3 h . a c 7 h it tea ottinghatraining@nas.org.uk support children with autism1effectively. Comm c0–hildreniow n and come 9 March, N
n to be e r d l i F h a c m g il n y i su lp .uk S model: he unicators pport seminEamra0il:s1tr41ain28in5g7@1n17as.org
vis al pro PD10 AAutism h en wit pm k orse Our 0 minars for pa mew a r f 30–7.3 rents a n o
intera
14 Marc
Teen time FEATURE
Home From Home Care was inspired by Laura, our lovely, unique and very special daughter. We support adults with learning disabilities and complex needs in residential Homes and welcome placements from all over the country. Being parent-led, we are renowned for offering a specialist, quality service that puts people at the heart of what we do.
er ’s t vid UK ges -led pro r la nt e re ar pa ial c t en sid re
Created by Parents to Make the Difference
As a mother myself, I understand the things that keep parents of children with special needs awake at night. I also know that thinking about the future is very daunting. Being informed when considering your child’s future adult life is essential. My name is Ann de Savary and, as Laura’s mother, I would like to invite you to get in touch to talk through your options for the future or to visit our Homes to see how different we are.
Autism, Epilepsy, Cerebral Palsy, PMLD & High Vulnerability Our blog - www.createdbyparents.com
LVS Pat ron HM T h e Queen
Tel: 0800 587 0372 www.homefromhomecare.com
Hassocks
Helping young people with Asperger’s and autism to thrive
A
“I am learning to work with the general public”
fres approach
“My teacher lets me play the drums when I am stressed”
A residential and day school for 8-19 year olds • Focusing on real work and employability • Developing strategies for coping with daily life • Promoting self awareness, health and wellbeing
01273 832901
“I found out I can cook - I am now training to be a chef”
Contact us to nd out more about our holistic approach to learning and the innovative methods we use.
info@lvs-hassocks.org.uk www.lvs-hassocks.org.uk LVS Hassocks, London Road, Sayers Common, West Sussex, BN6 9HT
Autism
11
Communication Spring 2013 | 11
My story George Harvey
George Harvey Diagnosis Aspergers since 2002 Age 18 Name
“ You’re not me!” B
efore we begin I’d like to make something quite clear: You don’t know me. Well, maybe you do ... a little ... but not the real me – not the whole me. You might think that you have me all figured out, but really you don’t. Because the truth is: only I know me. I don’t want you to feel I’m being rude – I’m not – but you have to understand that only by being me could you possibly understand what it means to be like me. You see, I’m not what you’d call an average, ordinary person. Ever since I was young I’ve had this condition that’s made my learning abilities and social skills more difficult than others. Some would pronounce the name of it differently to me, but I prefer my way, just as some people would prefer tom-mate-toes to tom-mar-toes – though I do like how their version sounds a lot like ‘burger’. Even now, as I write the opening to this book my condition is affecting me to the point where I’m going over and rewriting these paragraphs, just so I can make them sound right to you – and me. You should know that I’m not the only one with this condition; millions of people all around you – especially young children – quietly suffer the effects of it every waking day of their lives. Your best 12 Autism
friend could have the condition and you wouldn’t even realise. It’s not a disease, and it comes in various forms, but a lot of people get the wrong idea about it. Some mistake it for ‘dumbness’ or ‘weirdness’, which is why I think more people should be made more aware of it. Personally I think the media does it all wrong. True they put people like me on TV and show off the effects of the condition and it helps to raise awareness. Crosshead to go here But I think their portrayal of it, though intended to be meaningful, can at times feel almost insulting. There was a scene in an episode of Channel 4’s ‘The Undateables’ where an older man with my condition was filmed playing a Yu-Gi-Oh™ card game with his friend. I couldn’t help but feel a comparison as it was a game I used to play myself every day. The experience felt like a knife to my chest. It makes me feel proud to hear that people like a friend of my mother’s, whose grandson has the condition, uses the infamous Facebook to bring truer light to the issue. People claim to be experts on the subject, but in my view the only true experts on my condition are me and anyone else who’s actually experienced it. A positive side to the condition is that it allows me to use my brain in ways
George Harvey My story
Caption: Itas ma aut renders piendero ium faciaer natiunt ius aut volo officitem rerum ipsaerro tendusa duciet quid mo idem quatur aut et explaborrum reici aut hit audanime remporp
that others can’t. It gives me an almost photographic memory of certain, but not all, moments of my life. I could retell you a particular story that was read to me at the age of seven with word-for-word accuracy or even what I said at a particular moment whilst watching a pantomime or The Lion King musical years ago. There is absolutely no part of my day when I am not being affected by my condition. Even when trying to sleep, a
“Adult forms of affection and closeness also need to be developed.” world of fantasies swims across my mind every second. Fantasies where Pokémon™ characters play dodge-ball like that film starring Ben Stiller, where my favourite WWE™ wrestlers take part in game shows like Crystal Maze or Fort Boyard, or where characters from some of my all-time-favourite animes play out roles in episodes of Doctor Who. Crosshead to go here I basically take everything that I find
interesting – any character, scene or line that I find funny or dramatic – roll them up into one and play mind games out in my head. The excitement of these memories and crossovers is so exciting that my body can’t contain them and I find myself repeating lines – sometimes whole scenes – through my mouth no matter where I am or what I’m doing. It doesn’t matter whether I’m alone or with others, at home or at college, or even when I’m working on the till at ASDA, if I try to put these thoughts to the side it just makes me want to think of them even more. Naturally this causes trouble with my attention and my socialising. At this point, you’re probably lost at what I mean and want an example of what it’s like. Well here’s one for you. Imagine you see a group of people sitting and talking happily at a table. You sit down at their table with them and they barely even notice you. You want to engage with them, talk to them and be a part of the conversation, maybe even make friends with this group of people. But the trouble is you don’t have the slightest idea where to start. It’s almost like these people are talking a foreign language about a subject you don’t understand or have no interest in. You’re worried that if you try to say something to engage yourself, you’ll just end up saying something wrong and then they’ll laugh at
you for your mistake. You’re too worried to change the subject, because what you’re interested in might be down-right-boring to them and they’d just end up going back to their subject as if they’d never heard you at all. So in the end, you decide the best option is to just stay quiet, entertain yourself and not try to speak to this group of people at all. Even with my best effort this example does not even come close to what people like this feel 24/7. I’m 18, I’ve never been on a date in my life and I’m still very much a virgin. If you can’t understand a single word of what I’m saying it’s quite alright. It’s simply because you’re not me.
Share your story!
If you have a special story that you would be willing to share with other readers about any aspect of living or working with autism, email communication@nas.org.uk or write to My story, Communication, The National Autistic Society, 393 City Road, London EC1V 1NG. You could end up featuring in the magazine!
Autism
13
FEATURE Pretend play
Pretend play, fantasy fears nightmares &
14 Autism
Pretend play FEATURE
Many children with autism find it difficult to distinguish between fantasy and reality. Sara Rackow offers some tips and techniques for helping your child to learn the differences
I
f your child with autism is frightened to go to sleep, is very fearful of story book pictures or has nightmares about fantasy stories they see in films or programmes on TV, they may have an ongoing problem in distinguishing the boundaries between fantasy and reality. While most children by the age of three have no problem in suspending disbelief and know the difference between fantasy and reality, many young children with autism continue to find this distinction difficult and confusing, which can lead to excessive fear and distress. Even within the autism spectrum there are big differences between people in their ability to distinguish between fantasy and reality. Sometimes this lack of understanding is obvious and will be revealed by a lack of interest in pretend play, or a difficulty in understanding what is real and what is pretend in relation to toys or representational models and their function. All features must have crossheads The first step is to teach the difference between pretence and reality by using toys and real things. Keep checking that the child can categorise at this level and point out the purposes and uses of these objects. Encourage the repetition and completion of sequences of simple activities carried out for a purpose and then encourage your child to act out the same activities with representational objects or toys. If motivation is a problem, keep the activities within the child’s own interests and understanding. For example, you can help your child to prepare some real food and then afterwards do the same thing using toy foods and utensils, constantly
emphasising that it is just pretend. Confusion over what is real or fantasy may not be so obvious in children who show some level of play skills. At this level, try to teach the difference between real and imaginary and spell out context and scale using videos, photographs and real experiences. Some children may not see toys and cartoon drawings as a representation of the real thing and may therefore experience them as a separate entity. Encourage your child to categorise photographs of real animals alongside drawings of the same animals, or help
The first step is to teach the difference between pretence & reality them to create made-up creatures by combining different heads and bodies of familiar animals, emphasising that they are not real and that they are strange funny, fantasy animals. You could turn it into a game and encourage the child to make up names for the animals they have created, for example a “dog fish”. Talk to your child about real life and where you can find different animals and objects, as well as their uses. They break up the text After this stage, help your child to understand thoughts and feelings and encourage story writing creativity and make believe. To introduce the difference
between thinking and doing, try a counting exercise or sing songs where one number or word is not spoken out loud but is kept inside the head as a ‘thought’ indicated by a tap on the head. Make it explicit that you are not going to say the number or word but are going to keep it inside your head and think of the number instead. Give expression to thoughts and feelings by using pictures, speech bubbles and thought bubbles to show the difference between what is said and what is thought. Choose scenarios that are personal and relevant to your child and their own experiences. Making it easier to read If your child is frightened to go to sleep at night it may be necessary to teach the difference between what is a dream in the context of sleep and what a dream is in the context of aspiration. Show your child a drawing or photograph of themselves sleeping at night, with picture bubbles coming out of their heads to represent dreams while they are asleep. Then show pictures of something the child would like to happen as a dream in the context of aspiration. Make an illustrated list and help your child to categorise things that are possible and things that are obviously impossible, using made-up pictures. Make the lessons fun and encourage laughter and things which are obviously ridiculous. Teach the language and concept of possibility; for example, by using a weather forecast chart or sets of alternative scenarios. You will first need your child to learn the days of the week for this by making a visual list or referring to a picture calendar. Another way to show the difference between real life and fantasy is to make a diary using photographs of your child’s day. You can then show your child how to make up a fantasy story in the same way using pictures. At first, making up a story will be difficult and the child may need support with figuring out what happens and why. Start with just two alternatives.
Autism
15
FEATURE Pretend play
Pretend play, fantasy fears & nightmares Many children with autism find it difficult to distinguish between fantasy and reality. Sara Rackow offers her ten top tips and techniques for helping your child to learn the differences
I
f your child with autism is frightened to go to sleep, is very fearful of story book pictures or has nightmares about fantasy stories they see in films or programmes on TV, they may have an ongoing problem in distinguishing the boundaries between fantasy and reality. While most children by the age of three have no problem in suspending disbelief and know the difference between fantasy and reality, many young children with autism continue to find this distinction difficult and confusing, which can lead to excessive fear and distress. Even within the autism spectrum there are big differences between people in their ability to distinguish between fantasy and reality. Sometimes this lack of understanding is obvious and will be revealed by a lack of interest in pretend play, or a difficulty in understanding what is real and what is pretend in relation to toys or representational models and their function.
1 break up long features
The first step is to teach the difference between pretence and reality by using toys and real things. Keep checking that the child can categorise at this level and point out the purposes and uses of these objects. Encourage the repetition and completion of sequences of simple activities carried out for a purpose and then encourage your child to act out the same activities with representational objects or toys. If motivation is a problem, keep the activities within the child’s own interests and understanding. For example, you can
16 Autism
help your child to prepare some real food and then afterwards do the same thing using toy foods and utensils, constantly emphasising that it is just pretend. Numbered lists are good Confusion over what is real or fantasy may not be so obvious in children who show some level of play skills. At this level, try to teach the difference between real and imaginary and spell out context and scale using videos, photographs and real experiences. Some children may not see toys and cartoon drawings as a representation of the real thing and may therefore experience them as a separate entity. Encourage your child to categorise photographs of real animals alongside drawings of the same animals, or help them to create made-up creatures by combining different heads and bodies of familiar animals, emphasising that they are not real and that they are strange funny, fantasy animals. You could turn it into a game and encourage the child to make up names for the animals they have created, for example a “dog fish”. Talk to
2
your child about real life and where you can find different animals and objects, as well as their uses.
3 Make text more bite-size
After this stage, help your child to understand thoughts and feelings and encourage story writing creativity and make believe. To introduce the difference between thinking and doing, try a counting exercise or sing songs where one number or word is not spoken out loud but is kept inside the head as a ‘thought’ indicated by a tap on the head. Make it explicit that you are not going to say the number or word but are going to keep it inside your head and think of the number instead. Give expression to thoughts and feelings by using pictures, speech bubbles and thought bubbles to show the difference between what is said and what is thought. Choose scenarios that are personal and relevant to your child and their own experiences.
4 They break up the text
If your child is frightened to go to sleep at night it may be necessary to teach the difference between what is a dream in the context of sleep and what a dream is in the context of aspiration. Show your child a drawing or photograph of themselves sleeping at night, with picture bubbles coming out of their heads to represent dreams while they are asleep. Then show pictures of something the child would like to happen as a dream in the context of aspiration. Make an illustrated list and help your child to categorise things that
FEATURE play play FEATURE TeenPretend timePretend FEATURE
The first step is to teach the difference between pretence & reality
Autism
17
FEATURE Teen time
Pretend play, fantasy fears and nightmares Many children with autism find it difficult to distinguish between fantasy and reality. Sara Rackow offers some tips and techniques for helping your child to learn the differences
18 Autism
Pretend play FEATURE
I
f your child with autism is frightened to go to sleep, is very fearful of story book pictures or has nightmares about fantasy stories they see in films or programmes on TV, they may have an ongoing problem in distinguishing the boundaries between fantasy and reality. While most children by the age of three have no problem in suspending disbelief and know the difference between fantasy and reality, many young children with autism continue to find this distinction difficult and confusing, which can lead to excessive fear and distress. Even within the autism spectrum there are big differences between people in their ability to distinguish between fantasy and reality. Sometimes this lack of understanding is obvious and will be revealed by a lack of interest in pretend play, or a difficulty in understanding what is real and what is pretend in relation to toys or representational models and their function. All features should have crossheads The first step is to teach the difference between pretence and reality by using toys and real things. Keep checking that the child can categorise at this level and point out the purposes and uses of these objects. Encourage the repetition and completion of sequences of simple activities carried out for a purpose and then encourage your child to act out the same activities with representational objects or toys. If motivation is a problem, keep the activities within the child’s own interests and understanding. For example, you can help your child to prepare some real food and then afterwards do the same thing using toy foods and utensils, constantly emphasising that it is just pretend. Confusion over what is real or fantasy may not be so obvious in children who show some level of play skills. At this level, try to teach the difference between real and imaginary and spell out context and scale using videos, photographs and real experiences. Some children may not see toys and cartoon drawings as a representation of the real thing and may therefore experience them as a separate entity. Encourage your child to categorise photographs of real animals alongside drawings of the same animals, or help them to create made-up creatures by combining different heads and bodies of familiar animals, emphasising that they are not real and that they are strange
funny, fantasy animals. You could turn it into a game and encourage the child to make up names for the animals they have created, for example a “dog fish”. Talk to your child about real life and where you can find different animals and objects, as well as their uses. They break up the text After this stage, help your child to understand thoughts and feelings and encourage story writing creativity and make believe. To introduce the difference between thinking and doing, try a counting exercise or sing songs where one number or word is not spoken out loud but is kept inside the head as a ‘thought’ indicated by a tap on the head. Make it explicit that you are not going to say the number or word but are going to keep it inside your head and think of the number instead. Give expression to thoughts and feelings by using pictures, speech bubbles and thought bubbles to show the difference between what is said and what is thought. Choose scenarios that are personal and relevant to your child and their own experiences. If your child is frightened to go to sleep at night it may be necessary to teach the difference between what is a dream in the context of sleep and what a dream is in the context of aspiration. Show your child a drawing or photograph of themselves sleeping at night, with picture bubbles coming out of their heads to represent
The first step is to teach the difference between pretence & reality dreams while they are asleep. Then show pictures of something the child would like to happen as a dream in the context of aspiration. Make an illustrated list and help your child to categorise things that are possible and things that are obviously impossible, using made-up pictures. Make the lessons fun and encourage laughter and things which are obviously ridiculous. Teach the language and concept of possibility; for example, by using a weather forecast chart or sets of alternative scenarios. You will first need your child to learn the days of the week
Autism
19
FEATURE The change makers
The
change makers W
e’ve got an open door policy with parents now,” says Ginny Mason, Assistant Head Teacher with responsibility for autism at Oak Lodge School in Barnet, North London. “Parents have reported that things are better at home for their children. We have high numbers of children with autism who aren’t able to go home and tell their parents about their day, so we made sure that every teacher had a 15 minute slot at the end of the day to actually write in the home-school books. Parents are now able to talk to their children about their day because teachers are able to write it in the book.” This sounds like a simple way of improving school life for both children with autism and their parents - but changes like this only came about at Oak Lodge School after Ginny invited an Autism Accreditation advisor to help her assess the school. Oak Lodge, a special school that
caters for pupils aged 11 to 19, is one of hundreds of schools and services around the UK that have joined the internationally-recognised Autism Accreditation scheme. It’s an autismspecific quality assurance programme, established by the NAS, which sets out clear standards that services should meet in order to improve their quality of provision for people with autism. Breaking up the text “Almost fifty per cent of our pupil population are on the autism spectrum,” explains Ginny. “We used to have separate provision for young people with autism up until we realised we were accommodating more students than we could manage. The pupil population in Barnet was growing and our admissions of pupils with autism were higher than we anticipated, so we decided to reorganise the school and become wholly inclusive for children with autism.”
“At Oak Lodge I was ever so naughty” I was worried and scared. Would they like me? Could they cope? So I tested Ginny. I showed her just how entertaining I can be. I am so ashamed - it must have been horrible for her but she always kept the faith in me however out of control I was. She always said tomorrow could be better. “I felt more accepted as time
20 Autism
passed. The reasons are many. The autism-friendly manner has improved. Staff have become quieter and calmer. Nobody disrespects us anymore. The staff treat us with understanding. The atmosphere is positive. For me, new situations are difficult – I get anxious, but people understand and help. I feel safe at school. This is so important to all of us who experience the different reaction because of our autism from lots of people. I feel safe at school because I am appreciated as me.”
Chris Lean meets two of the hundreds of people trasforming the way people with autism are supported by schools and services around the UK
Ginny was given the role of overseeing Oak Lodge’s transition from having separate autism provision to being able to accommodate pupils with autism throughout the whole school. She decided to contact the Autism Accreditation scheme so she could use its widely
“Almost fifty per cent of our pupil population are on the autism spectrum” recognised standards as the basis for this transformation. Stephen, an Autism Accreditation Advisor, visited the school and, working with Ginny, set in train a process that resulted in the whole school achieving full accredited status just 18 months later. “We were accredited the first time we went for it,” says Ginny, “so it was a massive positive endorsement of all the work that the school had put in.” The first step was for Oak Lodge to undertake an audit of its autism provision – in other words, Ginny had to assess the school’s curriculum, physical environment, staff skills, and the autismspecific approaches they used, such as TEEACH and PECS, to see where they met the Autism Accreditation standards or where there was a need for improvement. “Stephen explained that the accreditation process isn’t just for day schools, it can also be for residential schools or adult services, so there are core standards that everybody has to meet regardless of the type of provision you’ve
Teen time FEATURE
Carrying out such an honest self-appraisal can be challenging Autism
21
FEATURE The change makers
got, and then there are specialist standards which are relevant to your provision.” Next, Stephen and Ginny put together an action plan for the school based on the results of the audit. This included reducing distractions in the physical environment and looking at noise levels, colour schemes, odours, fixtures, lighting and the organisation of furniture. Breaking up the text The plan also introduced changes to the layouts of classrooms to make it easier for pupils to learn independently. Ginny explains: “We created zones in the classrooms so that the pupils could see, for example, that this is an ICT zone, this is a social space for the morning where we sit and do our registration, this is a learning space where we do our group work, and this is an individual work station space. We had every classroom set up physically in the same way so that whichever room a child was in, they weren’t met with an
Fewer children were having meltdowns and we certainly saw improved behaviour.” anxiety about where to go”. Stephen and Ginny also identified a need to train staff to understand specific behaviour management strategies. By establishing an autism team of champions and identifying staff members to work collaboratively with a less experienced peer, Ginny was able to share knowledge and understanding between staff members through peer-to-peer team teaching. “The audit made it apparent that I needed to address the issue of staff using old behaviour management strategies like ‘time out’ or giving a child extra homework,” says Ginny. “We developed more flexibility in the staff approaches to behaviour, so they understood more about the rigidity and the inflexible thinking associated with autism. There was a significantly lower incidence of children having time out or children being brought to the pastoral manager because they weren’t coping. Fewer children were having meltdowns and we certainly saw improved behaviour.” “We also saw teachers communicating 22 Autism
“It’s not just about getting a logo to put on your letterhead.”
Stephen Dedridge, Autism Accreditation Advisor, on the accreditation scheme’s power to bring about real change. The Autism Accreditation scheme is at the vanguard of the NAS commitment to effecting real change. We know only too well that people with autism and their families are often frustrated with the poor quality of service they encounter. Accreditation is about ensuring that autism-specialist approaches are embedded in practice. I think the services that get the most from accreditation are those who don’t just see it as about getting a logo to put on their letterhead but who embrace it as a framework for taking a good hard look at the work they do. Carrying out such an honest selfappraisal can be challenging, but the process is as much about identifying what works well and where staff can take pride, as it is about where improvements could be made. When a service feels it is ready, it can put itself forward for a three day review. The peer review team verify the service’s areas of development and areas of strength in a detailed report which is then submitted to an
with each other much more in the staff room about autism - it was lovely because you could really feel the culture of autism in the school.” Breaking up the text It wasn’t just the staff who noticed the change – the school also had really positive feedback from parents. “We’ve just won the leading parent partnership award,” says Ginny, “and I don’t think we would’ve even attempted to register for that award before accreditation. But we’re confident now and you can see that.”
independent panel. It is this panel which decides whether the autismspecific practice within the service is of sufficiently consistent and sound quality. The cycle of self-appraisal, peer review and independent panel validation continues after a service has been accredited, so that the process of striving for further improvement can continue. I don’t think services get involved in accreditation unless they are already committed to doing their best for people with autism. But sometimes when services first join the programme, they just don’t know where to start. In these cases I have seen the accreditation process provide the framework they need to start identifying what they do well and to develop a greater sense of what kind of service they want to provide. I’ve seen services grow in confidence and competence, which can only be of benefit to the people they serve.
Now that Oak Lodge has achieved full accredited status, Ginny looks back with pride on the changes that she and her colleagues have brought about. “Without a doubt I’d recommend the Autism Accreditation scheme to other schools,” she says. “It’s a bit scary initially but once you’re in it, you realise how useful it is, how easy it is and how well the advisory team work with you.” Ultimately, the real benefit was not just to the school’s reputation, but to the pupils with autism who attend classes. Ginny was left in little doubt as to the
Teen time FEATURE
Develop PECS in your organisation What could be more valuable than giving someone the ability to communicate?
The special educational needs legal experts A law firm wholly dedicated to advising on special educational needs issues • Assessments
training • consultanc y • resources The Picture Exchange Communication System (PECS) teaches functional communication skills to children and adults with autism, and other learning and communication difficulties.
• Statements of special educational needs • Tribunal appeals • School admissions and exclusions • Disability discrimination claims
Highly competitive rates Meeting times/venues to suit you
The PECS Basic Training Workshop will teach you everything you need to know to be successful with this approach. Attend a workshop held regularly around the UK, or save money on large-scale training and consultancy by bringing our specialist consultants to you. Contac t us for more information: w w w.pecs.com or call 01273 609 555
info@hallandhallsolicitors.co.uk 01892 570540 www.hallandhallsolicitors.co.uk Pyramid Educational Consultants UK Ltd • 1st floor, Queens Park Villa, 30 West Drive, Brighton, BN2 0QW • registered in England No 3658330 telephone: +44 (0) 1273 609555 • fax: +44 (0) 1273 609556 • email: pyramiduk@pecs.com • www.pecs.com
Calverley House, 55 Calverley Road, Tunbridge Wells, Kent TN1 2TU
Specialist care pathways for children, young people and adults with autism, Asperger’s Syndrome and complex needs
Community Support Services For people aged 18+
Options Group’s Specialist Care Pathway. Specialist Schools For young people aged 8-19 Barton School North Lincolnshire Higford School Shropshire Kinsale School - Flintshire
AALPS Services Transitions Services for people aged 16+ AALPS North North Lincolnshire AALPS Midlands Worcestershire AALPS Cymru - Flintshire
Bredon House Worcestershire Applegate House opening February 2013 in North Lincolnshire Adult Residential Services For people aged 18+ Watermill House North Lincolnshire The Thicket West Yorkshire
Higford School on the BBC’s The One Show. Visit www. optionsgroup.co.uk or “Like” us on Facebook (www.facebook.com/ optionsgroupuk) to see Mary Dhonau’s moving interview aired in December. Jessica-Jane Applegate, Paralympics Gold Medal Winner, to open Applegate House in February! Contact 01724 733777 to find out more!
For more information about our services please call 08442 487187, e-mail info@optionsgroup.co.uk or visit www.optionsgroup.co.uk Autism
23
Communication Spring 2013 | 27
FEATURE Teen time
Teen time Puberty is a challenge for everyone and young people with autism need extra support to help them through this particular stage. Lynne Moxon advises.
S
exual development is a wideranging process linked to the basic human needs of being liked and accepted, showing, giving and receiving affection, feeling valued and attractive, and sharing thoughts and feelings. It is not just physical functioning; it also relates to sexual knowledge, beliefs, attitudes and values. Preparing for puberty is just one of the many areas of social and emotional understanding that will need to be taught to a person with an autism spectrum disorder (ASD) during their life, if they are going to have successful and rewarding experiences. Building social relationships by making friends and establishing intimate partners is a key developmental life
24 Autism
stage for young adults, so all children approaching puberty and adolescence will benefit from information and advice about sexual development and relationships. It is even more important for young people with an ASD who may not learn incidentally or from their peer group. They may approach other people in an inappropriate physical or verbal manner, misread subtle social cues or body language and behaviours, or not understand privacy. We should recognise that sexual development and curiosity is a normal developmental process. Even for a young person with complex learning needs and an ASD, many will have a need for relationships and intimacy with
others. How would you manage your sexuality if you had no sex education, could not talk to anyone and did not have access to books or other written or visual material? Some young people will also be gay or asexual and value some support and the chance to ask questions. Why do we need to prepare young people? Having Asperger syndrome (AS) can have a huge impact in adolescence and young adulthood, when successful social relationships are the key to almost every achievement. Non-neurotypical traits that are mild enough to be disregarded in childhood may become much more conspicuous in adolescence and this
Teen time FEATURE
Clear and consistent information is the key
Most successful sex education begins before adolescence in middle childhood
factors, such as age, gender, custom,
should be addressed early. with body hair. rules, relationship or marital status, and Bolton1 argues that difficulties in Developmentsoofon.the Thishormonal can make thissystem a difficult area work on with a childemotions. with an ASD, sexual experience, sexual expression and – wide moodtoswings, intense but highlights the need for sex education relationships are inevitable, given the Marked development of muscles. that goes beyond the basic physical facts. core ‘deficits’ in AS. Letting out aggression safely. Most successful sex education begins Sexual characteristics do not that are mild–enough to betell a boy in childhood may become before adolescence in middle childhood2. that his voicedisregarded will ‘break’ . more conspicuous adolescence Children need to be prepared for the Puberty is now much taking place earlierin than in and this should be addressed early. that are mild enough to be physical and emotional changesdisregarded that willin childhood previous generations, 1 and is earlier in girls Bolton argues that difficulties in sexual may become take place, and be very aware ofmuch body than boys. The average 12 to 14 years experience,issexual expression and more conspicuous in adolescence inevitable, given the this should early.and 13 relationships changes, privacy rules, personaland space and be addressed for girls to 15 for are boys. By the end core ‘deficits’ in AS. Bolton1 argues that difficulties in sexual distance, relationships and permission. of primary school,Most several girls a classbegins successful sexin education experience, sexual expression and Parents and teachers alike can help with will have begun menstruation so it is vital before adolescence in middle relationships are inevitable, given the 2 childhood need and to be core ‘deficits’ this, focusing on boundaries relating to in AS. that children know what. Children to expect Most successful sex education begins prepared for the physical and emotional the body (private parts), space (private understand whychanges changes are happening. that will take place, and be very before adolescence in middle places), and topics (private subjects). Henault3 thatprivacy rules, aware ofthe bodyfact changes, childhood2. Children need to be highlights spacecommon and distance,sexual prepared for the physical and emotional ispersonal Adult forms of affection and closeness masturbation the most changes that will take place, and be very relationships and permission. Parents also need to be developed. It’s important and teachers alike can help with this, aware of body changes, privacy rules, to be aware that a child is moving toward focusing on boundaries relating to the personal space and distance, body (private parts), space (private relationships and permission. Parents adulthood though, otherwise you may not places), and topics (private subjects). and teachers alike can help with this, What to teach? begin teaching them about boundaries Adult forms of affection and closeness focusing on boundaries relating to the Physical changes early enough. Most of the incidents also need to be developed. It’s important body (private parts), space (private growth manyischanges be aware that a–child movingin >toRapid and topics (private subjects). which lead to trouble for youngplaces), people body adulthood shape, hair,though, spots. Help with the toward otherwise Adult forms of affection and closeness with communication difficulties, ASD practicalities, eg sanitary may not begin teachingtowels them or about also need to be developed. It’s important you or learning difficulties are ‘boundary tampons,early spot cream and whatofto do boundaries enough. Most the to be aware that a child is moving with body hair.lead to trouble for incidents which toward adulthood violations’, brought on by the impulse of a though, otherwise Development of the hormonal system young people with communication you may not begin teaching them about > moment. – wide mood intense difficulties, ASDswings, or learning difficulties boundaries early enough. Most of the Parents and teachers are often development of by areemotions. ‘boundaryMarked violations’, brought on incidents which lead to trouble for out aggression safely. themuscles. impulseLetting of a moment. concerned to teach children about young people with communication Sexual – do not tell a Parentscharacteristics and teachers are often difficulties, inappropriate behaviour. This can be ASD or learning difficulties > boy that to histeach voicechildren will ‘break’. about are ‘boundary violations’, brought on by concerned problematic as there is no blacktheand white inappropriate behaviour. This can be impulse of a moment. Puberty is now taking place earlier problematic as there is no black and of what’s appropriate or inappropriate: it teachers are often Parents and than in previous generations, and is white of appropriate oraverage is earlier inwhat’s girls than boys. The can depend on different factors,concerned such asto teach children about inappropriate: it can inappropriate behaviour. This can be 12 to 14 years for girlsdepend and 13ontodifferent 15 for age, gender, custom, rules, relationship problematicor as there is no black and boys. By the end of primary school, marital status, and so on. This can whitemake of what’s appropriate or several girls in a class will have begun Read www.autism.org.uk/sexeducation inappropriate: so it is vital that children this a difficult area to work on with a childit can depend on different menstruation with an ASD, but highlights the need for Read View sex education that goes beyond the basic www.autism.org.uk/sexeducation Lynne Moxon’s talk at recent NAS conference. physical facts.
“Adult forms of affection and closeness also need to be developed.”
www.autism.org.uk/conferences
Physical changes Rapid growth – many changes in body shape, hair, spots. Help with the practicalities, eg sanitary towels or tampons, spot cream and what to do
rovide accurate P information. Develop personal values. Develop the necessary social competence. Start early! factors, such as age, gender, custom
rules, relationship or marital status so on. This can make this a difficul factors, such as age, gender, custom, know what to expect andwith understan to work on with a child an AS rules, relationship or marital status, and why changes are but highlights thehappening. need for sex educ 3 so on. This can make this a difficult area thatHenault highlights thephysical fact that goes beyond the basic to work on to with a child an ASD, masturbation is the most common know what expect andwith understand behaviour reported byeducation male adolescents but highlights the need for sex sexual behaviour reported by male why changes are happening. 3ASD. that goesan beyond theThis basic adolescents with an ASD. This is n with is not, in itself, a Henault highlights the physical fact thatfacts. itself, a problem, if it is done in masturbation common problem, ifis the it ismost done in private.in See page private. See page 27 for more on this sexual behaviour reported by male 27 are formild more onASD. issue. that enough tothis be This Young people with an ASD adolescents with an is not,Young people disregarded in childhood become have tactile sensitivity that with ASD often have sensitivity in itself,an a problem, if it ismay done in tactile often much more conspicuous in adolescence renders some intimate activities private. See page 27some for more on this issue. that renders intimate activities andYoung this should addressed early. physically uncomfortable. peoplebewith an ASD 1 physically uncomfortable. Bolton argues thatsensitivity difficultiesthat in sexual often have tactile experience, sexual expression and Cognitive changes renders some intimate activities relationships are inevitable, given the Make sure that young people do no physically uncomfortable. Cognitive changes core ‘deficits’ in AS. adulthood or the changes that it en Make sure that people Most successful sexyoung education begins do not Teachfear them about emotions and Cognitive changes before adolescence middle to entails. deal with them, how to manage adulthood or inthe changes Make sure that young people do not that fear it childhood2or . Children needthat to be anger, andto how to understand adulthood the changes it entails. and Teach them about emotions how prepared for theabout physical and emotional Teach them emotions and how neurotypicals (but choose your role deal with them, how tobemanage anger,with and changes thatthem, will take and very models care!). to deal with howplace, to manage aware of body changes, privacy rules, There is no correlation between how to understand neurotypicals (but anger, and how to understand personal androle distance, access to knowledge about sexuality neurotypicals (but choose your rolewith care!). choosespace your models relationships and permission. Parents (inappropriate) interest or behaviou models with care!). There There is no and teachers cancorrelation helpbetween with this, between Teach young people what they will is noalike correlation What to teach? focusing on relating to the to knowand as an adult. Ignorance bree access toboundaries knowledge about sexuality access to knowledge about sexuality and Physical changes body (private parts), space (privateor behaviours. fear but education and discussion a (inappropriate) interest or behaviours. (inappropriate) interest Rapid growth – many changes in places), and topics subjects). Whatyoung to teach? Teach people(private what they will need sexual feelings and behaviours have Teach young people what they will need body shape, hair, spots. wit Adult forms of affection and closeness potential to promote moreHelp appropr to know as an adult. Ignorance breeds Physical changes practicalities, eg sanitary towels o also need to be developed. It’s important actions and reactions. to know as an adult. Ignorance breeds fear fear but education and discussion about Rapid growth – many changes in tampons, spotiscream and what to to be aware that a child is moving Lynne Moxon a consultant sexual feelings have but education and discussion body shape, and hair,behaviours spots. Help withthe the about withsexual body hair. toward adulthood though, otherwise psychologist at ESPA (education an potential to promote more appropriate practicalities, eg sanitary towelshave or feelings potential Development ofwith the hormonal you mayand notand beginbehaviours teaching them about the services for people autism). sy actions reactions. tampons, spot cream and what to do – wide and mood swings, intense boundaries early enough. Most of the to promote more appropriate actions Lynne is a consultant with Moxon body hair. emotions. Marked development incidents which lead to trouble for psychologist at ESPA reactions. Development of the(education hormonaland system Clear consistent muscles.and Letting out aggression s young people withwith communication services for people autism). moodMoxon swings, intense – wide Lynne is difficulties a consultantinformation is the Sexual characteristics – dokey not te difficulties, ASD or learning emotions. Marked development of Provide boy that hisaccurate voice willinformation ‘break’. psychologist at ESPA (education and are ‘boundary violations’, brought on by muscles. Letting out aggression safely. Develop personal values. Clear consistent the impulseand of a moment. Puberty is now taking place earli services for people with autism). Develop the necessary socia Sexual characteristics – do not tell a information is the key Parents and teachers are often thancompetence. in previous generations, and is boy that hisaccurate voice willinformation. ‘break’. Provide concerned to teach children about earlier in girls than boys. The averag Start early! Develop personal Puberty is now takingvalues. placecan earlier inappropriate behaviour. This be 12 to 14 years for girls and 13 to 15 necessary social thanDevelop in previous generations, and problematic asthe there is no black andis boys. By the end of primary school competence. 1 Bolton, W. et al. (2006). Sex, mind, and emotion: inn earlier inwhat’s girls than boys. The white of appropriate oraverage is several girls in a class will have begu in psychological theory and practice. Karnac Books Start early! 12 to 14 years for girls and 13ontodifferent 15 for 2 Department for Children, andthat Families (DCS inappropriate: it can depend menstruation so itSchools is vital child (2008). Government response to the report by the S boys. By the end of primary school, Relationships Education (SRE) Review Steering Gro London: DCSF. girls a class willand have begun 1several Bolton, W. et al. in (2006). Sex, mind, emotion: innovation 3 Henault, I.View (2006). Asperger syndrome and sexuality Read in psychological theory and practice. Karnac Books. London: Jessica Kingsley Publishers. menstruation so it is vital that children 2 Department for Children, Schools and Families (DCSF) www.autism.org.uk/sexeducation Lynne Moxon’s talk at
>
>
>
> >
>
> > > >
> > > >
READ
www.autism.org.uk/sexeducation recent NAS conference.
(2008). Government response to the report by the Sex and Relationships Education (SRE) Review Steering Group. London: DCSF.
View VIEW
3 Henault, I. (2006). Asperger syndrome and sexuality. London: Jessica Kingsley Publishers. Lynne Moxon’s talk at
www.autism.org.uk/confere Talk
www.autism.org.uk/commu Lynne’s talk at recent NAS conference: recent NAS conference. www.autism.org.uk/conferences www.autism.org.uk/conferences
Talk
TALK
Communication Winter 201
www.autism.org.uk/community
www.autism.org.uk/community Communication Winter 2011 | 37
1 Bolton, W. et al. (2006). Sex, mind, and emotion: innovation in psychological theory and practice. Karnac Books. 2 Department for Children, Schools and Families (2008). Government response to the report by the Sex and Relationships Education Review Steering Group. London: DCSF. 3 Henault, I. (2006). Asperger syndrome and sexuality. London: Jessica Kingsley Publishers.
Autism
25
Autism The magazine of the National Autistic Society | Winter 2013
Rainbow nation Autism spectrum myths and reality
Personal Independence Payment
What the new benefit means to you
The way we are Real-life stories from our largesst survey
“The only expert on my condition is me!” A teenager tells his story
Also inside • Autism and relationships • Holidays designed for you • Advice for siblings
t i s u A m The magazine of the National Autistic Society | Winter 2013
Rainbow nation Autism spectrum myths and reality
Personal Independence Payment
“The only expert on my condition is me!� A teenager tells his story
What the new benefit means to you
The way we are
Real-life stories from our largesst survey ever
Also inside: Autism and relationships | Holidays designed for you | Advice for siblings
Autism Autism Autism Autism Autism Autism Autism Autism Autism Autism Autism
Autism
Autism
Autism
Autism
Autism
Autism
Autism
Autism
Autism
Autism Autism Autism
Autism Autism
Autism Autism Autism
Autism Autism JohnClarksonDesign