THE IRISH VOICE FOR INTELLECTUAL DISABILITY F RONTLIVolumNe 86 • SpringE 2012

AUTISM IN IRELAND

Early Intervention Parenting a Diagnostic child with ASD Classification

STANDARDS — EUCHARISTIC CONGRESS — HIQA— SURVIVAL Volume 86 • Spring 2012 F RONTLINE CONTENTS

FEATURE: AUTISM IN IRELAND 10 A Labyrinth? Joe McDonald attempts to answer 28 Supporting community some of the queries posed by living for adults with parents who have a child with Autism Spectrum Disorders autism . (ASD) and Developmental Disabilities (DD) 12 Applied Behaviour Analysis Nessa Hughes takes a look at (ABA) and Autism services available for adults Niall Conlon explores ABA and diagnosied with ASD. autism studies in Irish universities. 31 Our Journey 15 The future of diagnostic Maria Moran tells the story of her classification in autism daughter Jessica’s diagnosis on 04 Prof. Michael Fitzgerald comments the autism spectrum and the on the proposed new criteria for whole familys’ journey as they DSM V for autism and offers his tried to find their way through a REGULARS considered opinion of its impact on maze of treatments and opinions both parents and children. for the best method to help and care for her. 03 Editorial 16 Autism and diagnostic 04 News Update controversies Cork man’s art chosen for United Ruth Connolly explores the problem Nations stamp. of diagnostics over the wide spectrum of autism, sometimes NDA Disability shows more leading to misinformation, negative attitudes. misunderstanding and confusion. All-party agreement on disability motion on Seanad Éireann. 18 Caring for people with autism Brothers of Charity ordered to and intellectual disability pay €2 million in staff Ciaran Leonard explains why caring increments. for someone with autism is a Inclusion Ireland AGM and marathon, not a sprint. annual conference 2012. Disability campaigner appointed 20 Developing relationships to Council of State. through play: The Early Start Marino School, Bray embraces Denver Model for Young the Community Special School Children with Autism (ESDM) 31 Module. Mitchell Fleming looks at one model Oireachtas Justice Committee of play-based intervention for young hears presentations on modern children with autism. 32 Autism/Intellectual capacity law. 23 Parenting a teenager with disability and person- Additional funding for children autism —what Stephen is centred behaviour supports with autism. teaching me! Eleanor Finnegan and Kathy Fighting to survive. Avril Webster describes how she is O’Grady describe the person- The International Eucharistic learning to cope with the challenges centred positive behaviour Congress 2012. of puberty in tandem with her son supports provided by the Muiríosa Stephen. Foundation to people with 08 Letter to the Editor intellectual disabilities. 24 Here we go again 38 Standards: Preparing for Rita Honan urges us to learn from 34 Autism: An Occupational Therapist’s experience and registration and inspection the previous recession to minimise of residential services for the inevitable damage that will be perspective done by the restrictions being placed Margot Barry aims to highlight people with disabilities on necessary resources. how the diagnosis Autistic Joe Wolfe and Trevor Nesirky Spectrum Disorder (ASD) can introduce the 26 Getting started impact a child’s ability to develop second in a Mirena Vladimirova tells how a film and participate in activities of series of articles she saw as a teenager has daily living and how occupational designed to influenced and helped her as she therapists assess and intervene support service fought for services for her autistic with a child who has an ASD. providers in son in her hometown of Sofia, preparing for Bulgaria. 36 St Catherine's Association registration Services for Children with and an ASD Diagnosis inspection by Ian Grey, principal psychologist of the Health 23 St Catherine’s Services, details the results of a recent survey on the Information services provided by St and Quality Catherine’s Association in Authority. Wicklow.

frontline Spring 2012 FROM THE EDITOR CREDITS

Editor Stephen Kealy LEARNING FROM SPRING Editorial Board Owen Doody Spring, a time for new life, ever present in our Mitchel Fleming immediate environment, an opportunity to Colin Griffiths experience the maturing of seeds sown, to observe Siobhán Kane Michael McKeon new growth and change, to reap the rewards of Kathy O’Grady careful husbandry—ever mindful of the dangers of an unexpected frost. Mary de Paor What a season to enjoy. Niamh Power Good growth depends on our preparatory spade work—continually Jean Spain wrestling with the weeds that can choke the survival of fragile plant Michael Teehan endeavouring to retain their hold on life. The thoughtful gardener plans Angelina Veiga his/her work, making sure that rotation takes place as needed, that plants Published by struggling in poor ground are given an opportunity to try new soil, more Frontline Magazine Ltd. light, less wind and positioning them in a way that allows them Design and Production opportunities to showcase their colour and fruit. Niamh Power, Print Design Services This issue of Frontline looks at autism in Ireland—what opportunities Printed by exist for many with an ASD profile. Anecdotally, from the reports of Opus Print clinicians working in early intervention around the country, the number of ISSN 0791–1270 individuals presenting with a diagnosis of ASD appear to be high. Many of Published Quarterly those diagnosed have been identified through the assessment of need, or through early intervention services, or perhaps through both processes. Cover: Natalie Byrne from Strictly speaking, the assessment of need is not a diagnostic process, but if Sunbeam House Services a need is apparent then clearly it has to be stated against the child’s scales new heights at the presentation. Climbing Wall in Lilliput A recent article in The Examiner has rightly attracted extensive negative Adventure Centre, Mullingar (photo: Michael feedback for the author, as the underlying theme ignores the huge Teehan). understanding from research and practice about Autistic Spectrum Disorders. Many people with ASD have now opportunities to live a better Frontline Magazine Ltd. is a ‘not for quality of life because of that research, and our growing understanding of profit’ organisation, formed solely to autism, particularly the need to have an individualised approach that publish the magazine Frontline . Copyright resides with the individual fosters relationship. authors, but permission to reproduce From the various articles published in this issue, it is evident that better any article must be obtained in writing outcomes are possible when an individualised approach is implemented from Frontline . for those presenting with ASD. This understanding is also equally true for Views expressed in Frontline are those any child with a disability who comes into an early intervention service. of the authors themselves and not Again anecdotally, clinicians working on early intervention services have necessarily those of the editor or signalled how meeting the legislative imperative of the Disability Act can editorial board. have a negative cascade effect on addressing actual interventions, which Letters to the editor are welcomed. Name and address should be provided; are the essential, nurturing spadework of an individualised approach. they will be published unless otherwise A fundamental goal of early intervention is to provide opportunities to requested. ameliorate a child’s disability and to parents to further develop their Articles may be submitted for possible competencies. If a disproportionate amount of allocated resources are tied publication in Frontline . Guidelines for up in meeting a legislative imperative, without available corresponding authors are available from the editor. resources to address t hose identified needs, it is then reasonable to Items on meetings, conferences etc. question the value of allocating huge clinical resources to a process which should be submitted well in advance of events, to meet the magazine re-states to parents what they possibly already know about their son or publication schedule. daughter. Frontline editorial address for letters, Is it time to think again about how meaningful individualised services articles and other items for inclusion: can best be delivered to children at a young age, so that a difference can Frontline Magazine Ltd. be made to their lives with lasting positive effects? Unit C2, The Steelworks Stephen Kealy Foley Street, Dublin 1 E-mail: [email protected] Website: www.frontline-ireland.net Subscriptions: secretary@frontline- Contributors to this issue: ireland.net Reg. Chy No: 18745 Margot Barry Ian Grey Maria Moran Niall Conlon Paul Henry Kathy O’Grady Ruth Connolly Rita Honan Mirena Vladimirova Eleanor Finnegan Nessa Hughes Avril Webster Supported by Michael Fitzgerald Ciaran Leonard The People in Mitchell Fleming Joe McDonald Dr James Reilly TD Need Trust

frontline Spring 2012 3 NEWS UPDATE

CORK MAN’S ART CHOSEN FOR UNITED NATIONS STAMP

A painting by 25 year-old Colm Isherwood from Cork has His work features a variety been chosen by the United Nations Postal Administration of materials, as well as a mix to be depicted one of a series of stamps to mark World of techniques to create Autism Awareness Day (2 April 2012). texture. The UN describes his The Cork man’s painting was one of just eight pieces paintings as sensory and selected following a worldwide search for talented artists tactile. with autism. As for Colm’s brother “It was an extremely difficult and challenging process to Eric, music takes priority choose just eight designs from all the artwork submitted,” over art. said Rorie Katz, the creative director at the United Nations “He is too laid back for Postal Administration said. All of us were personally painting,” jokes Eric senior. touched by the stories of the artists and their families who “We try to get him are extremely passionate and supportive about raising motivated but he is more awareness for autism.” into music. He collects CDs Colm and his twin brother Eric have severe autism from the local store and that’s which means they have few ways to communicate with the his thing.” people around them. The 25-year-olds cannot talk, read or The UN project was designed to showcase the artwork of write but they understand others. people with autism to educate others of their passion, Since taking up painting about two years ago, art has creativity and talent. The stamps will be available from 2 April given Colm a new outlet. Currently, Colm is working hard (World Autism Day) and can be bought online from on producing more paintings for a planned exhibition unstamps.un.org/. which will hopefully coincide with the launch of the UN (with thanks to Journal.ie) stamp collection in April. In 2010, Colm sold 10 out of 12 paintings he exhibited at a show in the Cork Institute of Technology. That was his first ever exhibition. What about me: When the UN started to look for applications in September, the Isherwoods jumped at the chance to show Therapeutic Applications to Disability off their son’s talent again and submitted a number of paintings. “What is remarkable,” said Eric, “Is that his was the only one chosen from outside the United States and Canada.” Colm has been working with his teacher Aine Crawley on his painting and she has been a huge influence on his life and work. Depending on his mood, their sessions can last anywhere between 15 minutes and three hours.

The Institute of Psychotherapy and Disability is pleased to announced its upcoming conference ‘What about me: Therapeutic Applications to Disability’ to be held in the Dublin Writers Museum, Parnell Square, Dublin, Ireland on Friday June 22nd, 2012.

The conference will be of interest to clinicians, policy makers, disability service staff at all levels, advocates,

family members, educators and anyone

s e e k i n g t o p r o v i d e i n n o v a t i v e t h e r a p e u t i c

supports for people with disabilities. P

June 22nd, 2012 Dublin Writers Museum

Above: Eric and Veronica Isherwood, Mahon, Co. Cork, with Further programme and registration details coming soon. their two sons Eric Jnr (left) and Colm (right) (Provision). Queries can be received at [email protected]

4 frontline Spring 2012 NEWS UPDATE

NDA DISABALITY SHOWS ALL-PARTY AGREEMENT ON DISABILITY MORE NEGATIVE ATTITUDES MOTION IN SEANAD ÉIREANN There was cross-party support in the Seanad for a private member’s motion on disability that was heard in January. The The results of the National motion, which was put forward by a group of independent Disability Authority’s 2012 senators, led by Senators Mary Ann O’Brien and Marie Louise Attitudes Survey has shown that O’Donnell, called for inspection of disability services, modern people with a disability feel more law to replace the 1871 Lunacy Act, and the creation of a socially isolated and that public welfare system that recognises the individual needs of people attitudes towards people with an with disabilities. While both the government parties and Sinn intellectual disability have grown Féin had put forward amendments to the motion, these were more negative. People were withdrawn towards the end of the debate, allowing for cross- surveyed on a number of different party agreement on the motion. Inclusion Ireland briefed issues. One-in-five people surveyed senators in advance of the debate on the motion. The text of the said they would object if children debate can be viewed on www.oireachtas.ie (25 January 2012). with intellectual disabilities or autism were in the same class as their child, and nearly half (49%) believe that people with an intellectual disability do not have the BROTHERS OF CHARITY ORDERED TO PAY same right to sexual relationships as everyone else. The €2 MILLION IN STAFF INCREMENTS survey also showed that people with a disability are twice as likely to feel socially isolated (18% of respondents with The Labour Relations Commission has ruled that the Brothers of a disability, versus 9% without a disability) and also feel Charity in Limerick must pay increments to staff that could total they are restricted in participating in their community— over €2 million. The ruling affects 150 staff and concerns 34% of people with a disability surveyed said they have incremental payments which have not been paid since 2008. A been restricted in socialising as a result of their disability; disability campaigner said the Brothers of Charity in Galway is 22% said they feel their opportunity for ‘living with being forced to divert funds away from frontline services in order dignity’ is restricted. Inclusion Ireland says the survey to pay wage increments. Eamon Walsh of Hope4Disability said should be a wake-up call to government that action is that the Brothers of Charity had been diverting funds from needed to stop people with a disability from slipping frontline services for the past five years in order to pay the further away from mainstream society. Further details of increments and that, in light of further cuts to the HSE budget, the survey are available at www.nda.ie. this was unsustainable.

HIQA StAndArdS trAInIng OppOrtunItIeS

the Open training College, established in Over 500 managers and 1992, offers: staff have already ­ vital training opportunities to support staff participated and this is what some have had to in preparation for the implementation of the say: HIQA Standards; ­ a selection of 3 skills workshop levels ­ ‘Very clear, concise, suited to your organisation’s needs, easy to understand, delivered regionally or within your involved the group – organisation; excellent’ ­ customised training packages for special ­ ‘The Facilitator giving project teams, quality management teams the presentation did a fabulous job keeping it light and Boards of Management. and very interesting for the period of time. Would like to do the follow-up sessions’ All training staff have commenced their ­ ‘Before training, had more of a fear of HIQA - now careers on the frontline in disability services. see it as useful - good guidance - good practice’ The Open Training College is the only training ­ ‘Best course that I have done’ provider in the market focused solely on the Standards as they apply to disability settings. ­ ‘Initially I felt as a service we were greatly prepared. After today there are some areas to improve or change’

To learn more about what the College can offer you, or to reserve your place at our upcoming workshops, please call the HIQA Training line (01–2990558) or email [email protected] frontline Spring 2012 5 NEWS UPDATE

INCLUSION IRELAND AGM AND ANNUAL CONFERENCE 2012

Minister Brendan Howlin will be among the speakers at Inclusion Ireland’s 2012 AGM AND Annual Conference, which will be held in Whites Hotel in Wexford on 30 –31 March. Minister Howlin will speak on the topic of public sector reform and its impact on disability services. The theme of the conference is ‘A Home I Choose’. Other issues to be addressed will include the National Housing Strategy and the Congregated Settings Report. The conference will provide attendees with information on what the future holds as a result of these new policy developments in housing. Further information is available at www.inclusionireland.ie.

DISABILITY CAMPAIGNER APPOINTED TO COUNCIL OF STATE President Michael D. Higgins announced that Professor Gerard Quinn would be among his nominees to the Council of State in early January. Professor Quinn is the Director of the Centre for Disability Law and Policy at the NUI Galway School of Law. He has worked on many legal issues affecting people with a disability—his principal areas of concern being the need for modern capacity law and the UN Convention on the Rights of Persons with Disabilities. He is a former member of the Irish Human Rights Commission and regularly speaks at home and abroad on disability law and policy issues. He spoke at Inclusion Ireland’s 2011 conference on the law and people with an intellectual disability. The seven nominated members of the Council of State will sit with former presidents, taoisigh and chief justices, along with ‘ex officio’ members including the Taoiseach and Tánaiste. In addition to Professor Quinn, the presidential nominees are former Supreme Court judge Mrs Justice Catherine McGuinness; senior solicitor with Free Legal Advice Centres, Michael Farrell; Prof Deirdre Heenan of the University of Ulster; Prof Gearóid Ó Tuathaigh, Professor Emeritus in History at NUI Galway; community activist and social entrepreneur Ruairí McKiernan; and Irish emigrant rights campaigner Sally Mulready.

MARINO SCHOOL, BRAY EMBRACES THE COMMUNITY SPECIAL SCHOOL MODULE Marino School was first established in 1956. Since then the school has offered education to pupils with physical and multiple disabilities. Marino School is now MARINO SCHOOL School embarking on the development of a Community Special School model. This means Community Special opening its doors to a broader profile of pupils—to reflect the need and demand for such educational provision in the community. Marino School is a coeducational,

multidenominational day school for pupils aged 4 to 18/19 years.

Within the Community Special School model, Marino School endeavours to

provide an appropriate educational placement for pupils presenting with a diverse

range of special educational needs, including: Physical Disability, Hearing Impairment, Visual Impairment, Emotional Disturbance, Moderate General Learning Disability, Severe/Profound Learning Disability, Autism/Autistic Spectrum Disorders, Specific Speech and Language Disorder, Assessed Syndrome and Multiple Disability. Marino School provides a highly supported learning environment; a modified curriculum to suit individual needs; an Individual Education Programme based on pupil strengths and needs; a Links Programme offering pupils an opportunity to attend

and participate in curricular programmes and social activities in local mainstream

primary and post-primary schools; a Behaviour Support Plan to meet individual needs Church Road, as appropriate; use of computers, Smart Boards and Assistive Technology to facilitate Bray, Co. Wicklow.

Tel: 01 282 9807 and enable access to the curriculum; a School Leavers Programme incorporating Work

Experience in the community; Inclusive Physical Education programme including

Boccia, Wheelchair Hurling, Horse-riding and Swimming; low pupil teacher ratio; experienced teachers with qualifications in Special Educational Needs; Special Needs Enrolling now for September 2012 Assistants with specific skills and training in supporting pupils with special needs.

.ie Enrolling Now for September 2012. www.marinoschool Principal: Mai Byrne. Tel: 01–2829807, Email: [email protected].

6 frontline Spring 2012 NEWS UPDATE

OIREACHTAS JUSTICE COMMITTEE HEARS PRESENTATIONS ON MODERN CAPACITY LAW

On 22 February, the Joint Oireachtas Committee on at an oral hearing on the issue. The government has Justice, Defence and Equality heard oral presentations committed to publishing a new capacity bill in this Dáil from ten groups on the need for modern capacity law session. A new bill will replace the long outdated Lunacy in Ireland. Presentations had originally been scheduled (Regulations) Act of 1871 which has been widely for late January, but were postponed. In August 2011 acknowledged to have resulted in an archaic system that the Oireachtas Committee asked groups and does not respect the rights of people who are deemed to individuals to submit their views on modern capacity lack capacity. Among the groups due to present are legislation and over 70 submissions were received. A Inclusion Ireland, the Law Reform Commission and the number of organisations were then invited to present Irish Human Rights Commission.

ADDITIONAL FUNDING FOR CHILDREN WITH AUTISM The Minister for Health James Reilly TD announced in January the allocation of €1million in additional funding to address the needs of children with autism in 2012, with an additional €1million during each of the following two years— €3million in total. This funding, which will be reflected in the HSE’s Service Plan, will be focussed on addressing waiting times for specialist therapy services for children who have been diagnosed with autism and on developing Early Intervention Teams. FIGHTING TO SURVIVE Starting any new yea r there is always an opportunity to try to do things better and, for many, making new year’s resolutions. Issue 85 of Frontline (December 2011) presented a fresh look in a more competitive publishing environment. However, maintaining and increasing the subscription base is becoming extremely challenging and the Editorial Board is forced to rethink whether the magazine should become only an electronic publication (e-magazine). The Board is, however, aware that many people like to have a hard copy of the magazine. The Editorial Board would welcome the views of the readership on whether Frontline should only be in an electronic format. An electronic format will enable the Board to manage the cost base with a greater possibility of sustainability going forward. Ideas and comments to the Editor: [email protected]. The Frontline Editorial Board recognises that individuals and agencies face many demands, and there may be difficulties meeting the magazine’s subscription price (although the rates charged have not been raised for three years). As a publication, Frontline relies on the voluntary effort of a number of dedicated people who also have to balance competing demands on their time and energies. Frontline needs active support, however small, but The themes for forthcoming issues are set out below: support nonetheless. 87 Summer 2012 issue: HEALTH AND WELLBEING – COPY DATE 5 MAY 88 Autumn 2012 issue: EDUCATION – COPY DATE 25 AUGUST 89 Winter 2012 issue: SERVICES – COPY DATE 25 OCTOBER

The Editor and Board of Frontline invite articles relevant to the themes of the above issues, as well as articles on personal experience, events, conference reports, etc. Frontline provides an opportunity to showcase the achievements of people with intellectual disabilities and examples of innovation and good practice within services.

frontline Spring 2012 7 NEWS UPDATE

THE INTERNATIONAL LETTER TO EUCHARISTIC CONGRESS 2012: THE EDITOR Invitation to participate, contribute and share in the mission of IEC 2012. Dear Editor, Following a discussion As Issue 86 o f Frontline focuses on autism in Ireland, I with the IEC national would like to draw your readers’ attention to the committee in 2011, a misleading content of a recent article in the Irish number of initiatives Exami ner by Tony Humphreys (2 February 2012). I have arisen for people to probably should be drawing their attention away from participate in the events it, as it is likely everyone reading Frontline has already of IEC 2012. At a reacted to the amazing, surreal content of the article conference in and wishes in this day and age that none of us would preparation for IEC have to listen to such archaic and totally unsubstantiated 2012, held in Navan last claims. October, ‘Thomas’ from Many of Dr Humphrey’s statements were simply the L’Arche community factually wrong, not to mention inflammatory and in Belfast shared his life grossly insensitive. He demonstrated an incredible lack and faith story. The of insight as to how his missive would be received. How theme on which Thomas does someone who purports to be a psychologist spoke was ‘ Society—all dedicated to improving the mental health of others parts required for correct make such bold, cold and factually inaccurate assembly: The place of statements? I’m dumbfounded, but then again this is people with disabilities as not an individual who has any involvement whatsoever contributors to society and with the autism community in Ireland. In fact a number as citizens, equal in of his statements clearly demonstrate that he does not dignity, unique in person know even the basics about the autistic conditions. He and gifts’. inaccurately interpreted the results of Dr Sami Timimi’s research (as confirmed by the author himself on RTÉ’s Opportunities and Events at the Congress 10–17 June Liveline ), and by not acting quickly to correct any 2012 ‘misrepresentation, exaggeration, distortion or error’, he * People can register as a volunteer for the congress— compounded those inaccuracies. Where was he when details are given on the IEC 2012 website. parents and individuals with an ASD were calling into * There will be two workshops in the RDS on 15 June the radio programme? where people with disabilities will take a lead role. Br There is a vast body of international research Donatus Forkan (Prior General of the Hospitaller confirming the autistic spectrum disorders as Order of Saint John of God) and Fr Niall Ahern neurodevelopmental, genetically linked conditions. (Elphin Diocese) will introduce the workshops. (More Neither parents nor anyone else can cause it after birth. I information can be found on the IEC programmeme have had the privilege to meet more parents of children page). and young adults on the autism spectrum than most * Growing Wheat ‘Fruit of the earth and work of other professionals in Ireland and, yes, some of them are human hands’ is a key symbol connecting the earth, also either on the spectrum or have numerous our work, food for our body in bread and our soul in characteristics. This doesn’t stop them from being the Consecrated Eucharist - Holy Communion. A incredibly emotionally involved with their child, loving, number of disability services are growing display pots caring, dedicated to their best interest, and willing to of wheat to distribute in their community churches, invest their time, finances and emotional resources to schools, nursing homes for the elderly, etc. Others are support them. This has been my experience, and that of growing-on small pots of wheat for people attending my colleagues. Since Dr Humphrey’s article appeared, I the Congress to take home with them. (Again, there have heard from many autism professionals—each and are further details on the IEC website under ‘Primary every one is utterly appalled at the emotional upset Schools.) caused to these parents whom we admire so much. * Volunteer groups are wanted to manage the prayer What Dr Humphreys wrote was psychobabble from mid- garden at the Poor Clare community (on previous century. And to the affected parents, those of Simmonscourt Road, beside the RDS), providing a us who know you, know that you are nurturing, loving, memorable occasion for the public attending the affectionate, patient, warm, tender and kind. Shame on Congress. Each day will be available to a different Tony Humphrey’s for daring to say otherwise. service group of volunteers. If you or your service Rita Honan, Ph.D., would like to take on this role for a day, please Registered Psychologist, contact Paul on 087-7902563. Associate Fellow, Psychological Society of Ireland, Paul Henry School of Psychology, Trinity College Dublin.

8 frontline Spring 2012 FEATURE: IN IRELAND

Minister for Health, Dr James Reilly T.D., introduces our feature on autism for parents, carers and support services.

Dear Frontline readers,

There’s medical expertise about autism and there’s parental expertise. Parental expertise is hard-won. It’s earned through grief, struggle and hope. I know at first hand, watching my autistic son grow up.

When the diagnosis is first made, the initial reaction may be an overwhelming sense of loss. Your child’s expectation of a normal future seems irrevocably constrained, and the realisation is infinitely painful because all seemed well in the first year to 18 months of their life.

But parents come to terms with the initial shock and immediately want to know as much about this condition as possible. They quickly learn that the Autism Spectrum Disorder is exactly that – a Spectrum that ranges from being so severe that longterm care is the only option, to being so mild that it is not picked up until some children are in their 20’s.

What is absolutely essential is early diagnosis and early intervention, and despite much progress made in this area, so much more remains to be done. What all parents want for their child is for them to reach their full potential and it is our duty as professionals, and my duty as Minister for Health, to ensure as far as I can that the services are put in place to allow this to happen.

Right now, we find ourselves in the worst financial crisis to hit the nation in its history. Our health service has sustained a €2.5 billion cut to its budget over the past 3 years. We must strive to do more with less. Notwithstanding that, €1 million extra is available this year for the early detection and treatment of autism and I’ve guaranteed the same for the following 2 years.

A report I commissioned into the delivery of care in services to children with autism has just landed on my desk. It requires careful consideration before action. But what’s immediately clear is that some areas in our country have no service, whilst others have a Rolls Royce service. Not good enough. We may not be able to afford a Rolls Royce service everywhere, but we must have a fair and equitable distribution of service for all our children.

As a further measure of my commitment to autism I have made it an EU priority during the Irish Presidency in 2013.

I want to assure all people with autism and their parents of this government’s commitment to ensuring best outcomes for them.

If you’re the parents of young children just recently diagnosed with autism, you may believe the future looks bleak.

But let no one set a limit on your child’s horizon. There will be better times ahead.

______Dr. James Reilly, T.D. Minister for Health frontline Spring 2012 9 A LABYRINTH?

Parents of a child with autism are confronted with many government to prioritise these young bewildering questions. Will my child live a life of children and ensure that adequate resources are provided. independence? What impact will the challenges that my child Local HSE offices are working under with autism faces have on the lives of his or her siblings and extreme pressure as they attempt to how can I ensure that my son or daughter will be cared for share what are currently inadequate resources apportioned nationally to when I am no longer able to do so myself? These concerns are meet the needs of a rapidly growing perfectly normal and understandable, however, on a wider autistic population. However, there is also a requirement to review the way in level there are many factors that compound these difficulties. which the current system is operating. Joe McDonald attempts to answer some of the queries. Approximately 40% of children referred with suspected autism subsequently are found not to have it, which results in valuable resources being inappropriately directed. t is my view that, in a historical the options in the years ahead. It makes The Autism Act (2009) in the UK sense, a fundamental flaw has been sense to me that parents should be emphasises the need for an ‘increase in Ito categorise supports offered to thinking consistently ahead and make awareness and understanding of autism individuals with autism into ‘children’s’ informed decisions based upon the among frontline professionals and staff and ‘adult’ services. Whilst this may quality of supports and the evidence in the public service and developing have proven useful from an available. specialist training for staff in health and administrative, funding or governance Difficulties experienced by the social care’. A similar exercise should be perspective, unfortunately it has at individual with autism and their family rolled out in Ireland. times resulted in compounding may also be compounded by the failure The Review of the operation of the difficulties for the individual availing of by sectors, departments and agencies to Disability Act 2005 (2011) year stated services. A parent does not stop being a work collaboratively. The Vision for that ‘there is an uneven parent suddenly because their child change report (2006) stated that ‘the implementation of and lack of turns 18 years of age. needs of children with autism are consistent approach to the assessment This ideology has contributed to the diverse and require significant inputs of needs process’. There needs to be difficulties experienced by individuals from the educational system in addition equity of service and supports regardless during times of transition and it has to health’. Since that original Task Force of geographic location. To put it encouraged a culture whereby families report, there regrettably remains a lack bluntly, the quality of the supports tend, understandably, to think in the of cohesion between the Department of available should not be reliant on the short term only, out of a necessity to Education and Science, the National autistic child or adult’s address. survive rather than flourish. The recent Council on Special Education and the Just as significant, in my eyes, is the National Review of Autism Services, Past Health Service Executive. These deficits failure of government to enact the piece present and way forward ’ emphasises the can only be addressed through a of legislation whereby the entitlement requirement for a ‘life span approach’. focussed and dedicated commitment to early assessment is available for It is crucial that in future the from all stakeholders not only in terms children aged 5–18 years. This is having individual with autism be viewed in a of the sectors traditionally associated a detrimental effect upon many young holistic manner and that their life with those with special needs, but also people with autism, not to mention course be viewed in its entirety when from sectors considered to be their circle of supporters. Without the planning the necessary supports. I have mainstream. diagnosis they cannot receive the been in the sitting rooms or at the For the parents of the young child supports that they require and valuable kitchen tables of many mothers and with autism, the Disability Act (2005) time is lost. The National Review of fathers and listened to their frustration and the legislative right and entitlement Autism Services highlights the over the lack of information available to to an early assessment were a significant significant shortage of multidisciplinary them at crucial times in the lives of landmark. The failure of the state to staff to manage the size of the caseloads their autistic child. meet the deadlines set out for the for both diagnosis and intervention. My advice to individuals, parents commencement and completion of Also, the growing emphasis by the and families is to take a proactive assessments is worrying, to say the least. HSE upon targeted funding in order to approach, to consider all of the In part this is due to the lack of funding put in place such multidisciplinary potential supports available—to for the necessary multidisciplinary staff supports for children has resulted in a research, visit and review all of the required to carry out the assessments. lack of recognition for the needs of services, in order to become aware of There is a requirement for the present adults with autism. We must ensure

10 frontline Spring 2012 AUTISM

that this population does not become a lost generation. The new government’s manifesto The recently completed Review of disability policy is on disability is keen to allow the ratification of the UN Convention of potentially a landmark report. It points a path towards Rights of Persons with Disabilities. This is welcome, particularly when even a new way in which those with autism may be today individuals with autism cannot supported in this country—a shift away from access something as basic as dental care when it is required. It is essential that compliance with rules to an attainment of outcome- these rights are embraced and that real and tangible outcomes result as a based standards and a demonstrated commitment to consequence. continuous quality improvement. The amount of new funding available in 2011 for young people leaving school and making the transition into adult services was cut by more than 50% (compared to 2010). It The danger is that their needs may not working relationship we have with the appears at this stage that there is no be captured through the research and, families who use our service is viewed as new funding being made available for subsequently, not planned for in a one of our core strengths. Real, school leavers in 2012. This will result budgetary way. meaningful and effective supports that in significant stress for families living On a more positive note, the offer hope, improve the quality of life with autism. immanent auditing of service providers not only for the individual with autism What we now require is a by the Health, Information and Quality but also for their circle of support. commitment from government to Authority (HIQA) is a welcome The challenge that lies ahead is to multi-annual funding to those with development—welcomed by all service preserve and continue the good work autism. Funding within Health and providers including the CAA. This will that has been carried out in what will be Social Services that is ring-fenced for ensure that quality-assured person- an extremely challenging next few those with autism should in no way be centred supports become the norm into years—to embrace the positive policy used to shore up deficits in other the future. changes that I have outlined above and health-service areas. Similarly, the recently completed to ensure that they result in real Service Providers such as the Cork review of adult day services in this measurable and tangible results for Association for Autism could work country and the subsequent New those with autism. I believe that despite more effectively, efficiently and more directions initiative is also a positive step the current economic crisis, there is a economically if they could plan 3, 4 or forward for those school-leaving real opportunity to embark upon new 5 years in advance in confidence. This children entering adult day services. ways of thinking when it comes to is not possible at present. Core budgets The recently completed Review of autism and I look forward to working have been reduced by approximately disability policy is potentially a landmark with individuals, families and all 14% since 2008, whilst demand for report. It points a path towards a new stakeholders in achieving quality supports has never been greater, with a way in which those with autism may be outcomes in the years ahead. FL growing expectation in terms of supported in this country—a shift away quality. from compliance with rules to an Joe McDonald has a Bachelor of Arts The National Intellectual Disability attainment of outcome-based standards Degree in Applied Management (Not for Database (NIDD) is the current tool for and a demonstrated commitment to Profit), a Diploma in Health Service which approximately 70% of yearly continuous quality improvement. Management, a Diploma in Health & funding in allocated. There are two Each person with autism will have Social Care and is currently completing a difficulties with this. The NIDD an assessment of needs shaping that Master Of Arts Degree in Leading research shows clearly there will be an individual’s support plan. In turn this Innovation & Change. He has worked for 6 enormous demand for residential, day will be used to identify an years with individuals with acquired brain and respite supports over the coming individualised budget that is effectively injuries, 3 years in general Intellectual two years. The actual levels of funding attached to the person and they will Disability and for the last 9 years being made available for this have an input into how this resource is exclusively in the area of Autism and anticipated demand are only a fraction used to meet their needs. This may be Asperger Syndrome. He has been Director of of what is actually required. It is clear termed direct payments or brokerage Services for the Cork Association for Autism now that there will be significant levels amongst other labels. The result, (CAA) for the last seven years. of unmet need. Government must not regardless of the label, should be greater The CAA has successfully merged the two ignore these statistics. empowerment for the individual with key issues of advocacy and Service Provision The second issue in respect of the autism. This could be revolutionary, if it and in the process offers high quality, truly NIDD is the fact that many individuals is implemented effectively. The CAA person centred supports based upon the with autism are simply not on it— welcomes such a development. We individuals ability, aspirations and vision either through a lack of awareness of its pride ourselves on our standards of for the future that they desire. existence, or the fear of stigmatisation service provision. The individualised The CAA is firmly rooted in the social on being placed on such a database. person-centred supports and the close model of disability.

frontline Spring 2012 11 APPLIED BEHAVIOUR ANALYSIS (ABA) AND AUTISM

Behaviour Analysis has a long history in Ireland and Behaviour Analysts have operated in Irish universities since the 1960s. In recent years, interest in the area has surged in response to the encouraging results obtained during research into comprehensive behavioural interventions for people with autism. There are four Irish universities currently offering postgraduate qualifications in Behaviour Analysis and the number of Board Certified Behaviour Analysts (BACBs) continues to increase. Niall Conlon explains.

he response of Irish consumers to discrete trial instruction, activity interventions to be effective in treating behavioural interventions for schedules, behaviour chaining, many forms of problem behavior, Tautism has been very positive, functional communication training, including self-injurious behaviour when compared to the alternative peer-mediated social skills training, self- (Iwata and Lewin 2002), aggression interventions (Grey, Lynn and McClean management and natural environment (Oliver, Oxener, Hearn and Hall 2001), 2010; Keenan, Dillenburger, Doherty, teaching. These procedures have been and pica (Piazza, Roane, Keeney, Boney Byrne and Gallagher 2007 ) and evidence employed to establish and improve and Abt 2002). There have also been of these interventions’ effectiveness behaviours related to communication several studies examining the continues to accumulate (Virués-Ortega (Bondy and Frost 2001), daily living effectiveness of ABA teaching strategies 2010). In spite of this, a great deal of skills (McClannahan, MacDuff and with children and adults in Irish misinformation exists regarding ABA Krantz 2002) and academic skills contexts (e.g. Murphy and Barnes- (Department of Education and Science (Wacker and Cooper 1996). Similarly, Holmes 2010; Lydon, Healy and Leader 2001) and, while many Irish empirical studies have shown ABA 2011; McDowell, Duffy and Kerr 2007). professionals have embraced ABA, some continue to hold inaccurate or outdated views of behavioural interventions for Early Intensive Behavioural Intervention people with autism (Ridge and Guerin 2011). ABA is closely associated with autism owing to the dramatic effects of early intensive behavioural intervention (EIBI) reported in some studies. In one of the What is Applied Behaviour first studies of EIBI, Lovaas (1987) found that 48% of children who received EIBI Analysis? achieved normal functioning and progressed to mainstream schools. The study ABA is the applied arm of the science of used matched control groups and multiple pre-treatment and follow-up behaviour. It is sometimes referred to as a measures. Lovaas (1987) reported average gains of 20 IQ points for participants method, but is better thought of as a who experienced 40 hours per week of behavioural intervention for two years scientific approach to solving problems or more. In contrast, those in two control groups failed to show similar gains. A of social significance. The treatment follow-up study by McEachin and his colleagues (1993) determined that the package that a behaviour analyst intellectual and academic gains of the original EIBI group remained stable recommends for a client will most likely several years after treatment. feature a range of evidenced-based Since Lovaas’ original EIBI study, there have been several replications behavioural techniques that are anchored (including randomised control trials) that demonstrate the powerful effects of in the philosophy of behaviourism. EIBI (Dawson et al 2010; Eldevik, Eikeseth, Jahr and Smith 2006; Howard, Behaviour analysts use the scientifically Sparkman, Cohen, Green and Stanislaw 2006; Remington et al. 2007). There validated principles of learning to modify have also been examinations of the effectiveness of EIBI in Irish contexts (Healy, the environment in order to improve Leader, O’Connor and Kenny 2008; O’Connor and Healy 2010). Reichlow meaningful behavior, with a view to (2011) examined 5 recent meta-analyses of EIBI for children with autism and improving the quality of life of found that it was a ‘powerful intervention capable of producing large gains in individuals, families and communities. Specific behavioural teaching procedures IQ and/or adaptive behaviour’. It has also been found to be an extremely cost- include precision teaching, video effective intervention (Chasson, Harris and Nealy 2007). modelling, pivotal response training,

12 frontline Spring 2012 Is ABA autism-specific? ABA is not an autism-specific Eclectic versus ABA therapy. ABA has also been shown as In Ireland, autism treatment frequently involves the use of an ‘eclectic’ effective to use with a number of treatment model; however, the research indicates that ABA is generally populations including schizophrenia more effective than an eclectic approach. Howard et al. (2005) compared 4 (Wilder, Masuda, O’Connor and months of EIBI for children with autism , with two other intervention Baham 2001), attention deficit groups. The first group received an intensive, ‘eclectic’ autism treatment hyperactivity disorder (Northup et al. 1997) Down Syndrome (Dalton, that included the use of the TEACCH methodology, sensory integrative Rubino and Hislop 1973), and therapy and a limited amount of ABA therapy. This treatment was delivered feeding disorders (Piazzaet al. 2003), for 30 hours per week during 1:1 or 2:1 instruction sessions. The second as well as typical learners (Darrig et group received non-intensive public special education. Participants were al. 2005). ABA is commonly carefully matched to groups and, although the groups showed no associated with autism because of significant differences on pre-treatment measures, the EIBI group widespread coverage of its demonstrated an average increase of 31 IQ points, while participants in the effectiveness for people with autism. other two treatment groups demonstrated an average increase of just nine points. Similarly, Remington and colleagues (2007) found EIBI to be more Who designs and implements effective than standard educational services or eclectic services. the ABA programme? It is important to note that adopting an eclectic approach is not the ABA programmes have been same thing as working in a multidisciplinary team. It is common for successfully implemented by a behaviour analysts to work with other professionals, such as occupational variety of professionals and therapists, speech therapists, doctors and physiotherapists, when designing paraprofessionals including doctors, EIBI programmes similar to those described in the empirical record. nurses, teachers, care workers, ABA tutors and special needs assistants. ABA programmes have also been by breaking a complex skill down experience success. Similarly, proven effective when implemented into smaller steps and individuals with autism sometimes by ABA professionals. However, it systematically provides praise or struggle to generalize, therefore should be noted the internationally other rewards in response to the behaviour analysts take care to recognised Behaviorist Analyst individual’s behaviour. Motivation teach skills in a way that will lead Certification Board recommends that is a crucial part of any behaviour to generalisation to new settings, only Board-certified behaviour analytic intervention and the conditions and people. analysts are sufficiently qualified and therapist will frequently make In making judgments about a experienced to design behavioural alterations to the environment that client’s progress, behaviour interventions (BACB 2004). increase the individual’s motivation analysts avoid the use of subjective to learn a particular skill. opinion and instead focu s on What does a behaviour analyst Typically, ABA interventions carefully collected and objectively do? provide multiple opportunities for a described data. These data are then When a behaviour analyst begins learner to practise and master a skill carefully analysed and used to working with a person with special in order to maximise the number of optimise the effectiveness of the needs, they assess the individual’s opportunities for the learner to programme for the client. current abilities and needs in order to select goals that will make a meaningful impact on the life of the learner in question. The assessment will typically involve examining contextual factors such as the room in which behaviour occurs; motivational factors such as hunger or thirst, verbal antecedent events and the consequences that result in changes in the probability that behaviour will occur in the future. Client, parental and caregiver input is crucial at this point of the intervention and the people who care for the client will later be taught how to help implement the programmes the behaviour analyst puts in place. When the behaviour analyst begins to teach the target skills to the individual, he or she typically begins frontline Spring 2012 13 AUTISM

attention to the function of a ABA with older children and adults challenging behaviour and will seek to teach replacement behaviours that EIBI was developed for young children with autism, and as such it may not be match its function where possible. appropriate for older children and adults with autism; however, there are alternative approaches that cater to the needs of older individuals (McClannahan, MacDuff Have any expert groups and Krantz 2002; Palmen, Didden and Lang 2012). ABA interventions for older recommended ABA? learners can take place in a variety of settings including schools, residences, or ABA has been recommended as a workplaces. In comparison to EIBI, these interventions focus more on developing treatment for autism by respected group participation skills and independent daily living skills. Research indicates that organisations such as the US Surgeon these interventions can be effective in teaching older children and adults with General, the American Academy of Paediatrics and the New York State autism a variety of new skills (McClannahan et al. 2002). Department of Health. A recent report by Ireland’s National Council of Special How do behaviour analysts deal Education (NCSE 2011) found with challenging behaviour? siblings, teachers or other significant behavioural approaches to be among the Behaviour analysts are frequently people in the life of the individual, most effective for treating students with called into schools, hospitals, homes which can be used to guide direct emotional and behavioural difficulties, and residential service settings to deal observations. The most precise form of including students with autism. The with challenging behaviours such as functional assessment is known as a National Standards Project (2009) self-injury and physical assaults. The functional analysis. While very conducted the largest review of the main tool that behaviour analysts use powerful, a functional analysis is the subject of autism intervention and to decrease challenging behaviour is most difficult form of functional concluded that the overwhelming the Functional Behaviour Assessment assessment to conduct properly and majority of effective treatments for (FBA). Using an FBA involves an should only be attempted by a board- autism were developed from ABA. examination of how the individual certified behaviour analyst with interacts with their environment, and relevant experience. For more information aims to discover specifically when, The functions of behaviour can be If you would like to find out more about where and why problematic behaviour divided into those that are used to ABA or to find a local BCBA, visit arises. It is not always easy to recognise obtain positive reinforcement and http:// www.bacb.com. FL the cause of any particular behaviour those that are used to obtain negative and it can be particularly difficult to reinforcement. Positive reinforcement References with the editor. identify the function of challenging involves obtaining something. For behaviour in people with special example, the function of a self- Niall Conlon attended Trinity College needs, because they may also have injurious behaviour might be to obtain Dublin where he was awarded a MSc difficulties in communicating. The attention from a parent, or it might be Psychology (Applied Behaviour Analysis) benefit of the FBA is that it helps us to an inappropriate way of accessing a and a Postgraduate Diploma in Applied learn more about the causes or preferred toy, activity or snack. It could Behaviour Analysis. He is a student functions of challenging behaviour also be automatically reinforced by the committee member of the Psychology Society and this knowledge can then be used release of endorphins within the body of Ireland’s Division of Behaviour Analysis to formulate an individualised effective which cause pleasant physical and a member of ABA Ireland’s executive treatment for a particular individual’s sensations. Negative reinforcement committee. He worked for three years as an challenging behaviour. typically involves stopping, avoiding or ABA tutor at the Applied Behaviour Analysis There are two main types of FBA: postponing some negative condition. School for Children with Autism in descriptive assessment and indirect For instance, a child might run away to Kilbarrack Dublin and is currently employed assessment. Descriptive assessments escape a barking dog, or they might by St Catherine’s Association, Wicklow, as a involve the direct observation of the scratch their skin to remove an itch. behaviour support worker. behaviour in a natural setting. The Once a behaviour analyst has ABC sheet can be used in direct enough information about the observations, or there are alternatives circumstances in which the such as scatterplots, or specially challenging behaviour occurs, he or designed data collection forms. she can form a hypothesis about its Indirect assessments get their name function and put in place an from the fact that the data they intervention designed to decrease its provide is based on recollections of the frequency. Some challenging behavior, rather than direct behaviours have single functions, observations. Indirect assessments are while others may have multiple generally used in conjunction with functions and any intervention will be forms of descriptive assessment. There individualised to the needs and are many interviews, checklists and capabilities of a particular individual. rating scales that have been specially As a result, every intervention will be designed for functional assessments different. However all behavioural that can be carried out with parents, interventions will pay particular

14 frontline Spring 2012 THE FUTURE OF DIAGNOSTIC CLASSIFICATION IN AUTISM

Prof. Michael Fitzgerald comments on the proposed new criteria for DSM V for autism and offers his considered opinion of its impact on both parents and children.

he proposed criteria for DSM V correctly pointed out that ‘if you and parents that the child has the for autism is a matter of major could be shown that there were real autism broader phenotype, that is Tconcern for child and benefits in accuracy of diagnosis from Autism Spectrum Disorder. It looks like adolescent psychiatrists. The new adopting this lengthy procedure’ then now that I am going to see far more of criteria are inappropriately narrow and she would be happy to go along with these distressed patients if DSM V is will leave many patients now meeting the tedious assessment procedure and brought in, in its present form, which DSM IV criteria losing their diagnosis instrument (Feinstein 2010). There is appears likely—although they are still and their services for autism. You and absolutely no evidence for this taking submissions on DSM V autism. I Shen (2011) showed that only 60% of tedious long-winded assessment don’t think parents should have to cases with autism DSM IV met new procedure, particularly in clinical suffer unnecessarily because of the criteria for DSM V. The new criteria go practice. Professor Bishop correctly above reasons. Their energy should be back to Kanner’s Autism (1943) and concludes that ‘the originators of the put into therapeutic activities for their are narrow criteria which don’t take instrument have never demonstrated children, not having to go from one into account current research and the that you actually need such a long professional to another to get a broader autism phenotype, which is process—it is really more an article of diagnosis. DSM V will have Autism autism as we meet it in clinical faith to them’ (Feinstein 2010). Spectrum Disorder, but not under practice. Kanner’s Autism would meet Professor Bishop also points out that Pervasive Developmental Disorder. ADI criteria, the gold standard for in relation to the ADI-R-ADOS that DSM V is creating a new category research on autism, but not there are ‘plenty of children who (social communication disorder) appropriate clinical practice. Adam come out as meeting criteria on one separate from autism. This will not Feinstein (2010) noted that at the instrument only, and there seem to occur in ICD II. In my view, this new International Meeting for Autism be no sensible guidelines on how to category is not a separate category, but Research in London in 2008 many of proceed, other than to seek expert part of autism. FL the most highly regarded researchers clinical opinion.’ Professor Bishop in autism in the world ‘lambasted the recommends ‘doing studies to see References tool (ADI-R) for missing many cases of what is the minimal set of items you Feinstein, A. 2010 A history of autism . autism’, and that it was ‘an expensive have to get reasonable diagnostic Wiley. and ineffective instrument’. It is accuracy and I doubt that we really Baird, G., 2008 (Personal extremely expensive and it is need a three hour interview for each Communication) prohibitive for the developing world, case’ (Feinstein 2010). Baird, G., Simonoffe, Pickles, A., and it inhibits the possibility of Using narrow criteria for autism, Chandler, S., Loucas, T., Meldrum, research in autism in developing Baird (2008) pointed out that you get D., Charman, T. 2006 countries if they wanted to be a prevalence of autism of 25 per Prevalance of disorders of Autism published in international journals. At 10,000 when you use these criteria. Spectrum Disorder in a population the 2008 meeting which I attended, I When you use a broader autism covert of children in South Thames, heard researchers from Australia criteria (Baird et al 2006), found the Lancet, 368 , July 15, 210-15. complaining about its prohibitive true prevalence of 116 per 10,000. Ventola, P. et al. 2006, Agreement cost. Professor Dorothy Bishop, Ventola et al (2006) showed that the among four diagnostic Instruments Professor of Developmental ADI-R was significantly for Autism Spectrum Disorders in Neuropsychology at the University of underdiagnosing toddlers. I am toddlers, Journal of Autism and Oxford, criticised the ADI-R for the continuing to see parents of children Developmental Disorders , 36 (7), 839- vast amount of time it takes for with autism who come to me in great 47. ‘training’ in the use of the instrument, distress and tears because they have You, Y. and Shen, C. 2011 A pilot study ‘time for administration and time for been told their children do not meet of the diagnostic performance of scoring, and consensus coding’ criteria for autism based solely on this DSM IV-V in relation to autism, NAJ (Feinstein 2010). Professor Bishop test, when it is absolutely clear to me Med , 4 ( 3), 116-123.

frontline Spring 2012 15 AUTISM AND DIAGNOSTIC CONTROVERSIES

Ruth Connolly explores the problem of diagnostics over the wide spectrum of autism, sometimes leading to misinformation, misunderstanding and confusion.

ast week I met with the parents of When autism researchers arrived at a thought to occur in a least 1% of children. a 50-year-old woman, Mary, who State Psychiatric Hospital near However, there is a 6-14 fold variation in Lhas autism and intellectual Philadelphia in the United States a few current studies estimating prevalence disability. After 20 years living in a years ago, they found a 63-year-old man rates. When Leo Kanner first described congregate setting, Mary has finally who spoke at length about Elvis Presley, autism in 1943, he based his observations been provided with her own home and compulsively rocked in his chair and on 11 children. By 1966, estimates does not have to share it with other patted the corridor walls. The man, who suggested prevalence rates of 4.5 per people. Mary talks about this transition had lived in the psychiatric hospital for 10,000 children. By 1992, 19 in every as her ‘romotion’. The meeting with most of his life, displayed what the 10,000 children were diagnosed with Mary’s parents was to reassure them researchers considered the classic autism. Numbers have since skyrocketed. that Mary is adapting well to her new symptoms of autism. His medical notes, By 2006, the US centres for disease control living arrangement and has shown a however, said that he was ‘schizophrenic and prevention (CDC) found that autism significant decrease in her levels of and mentally retarded’. When they delved was now affecting 90 in every 10,000 stress and anxiety associated with her through the file the researchers learned child—in other words 1 in every 110 diagnosis of autism. We were able to that this man had been seen by Dr Leo children had a diagnosis of autistic share with Mary’s parents the great Kanner, the psychiatrist who had first spectrum disorder. strides that Mary continues to make in described autism. In notes dated from Many researchers believe that this terms of new life experiences—her first- 1954, Kanner himself had given this man increase has been driven largely by an ever train journey, her first trip to the a diagnosis of autism. Later other doctors expanded definition of the disorder and cinema and her commitment to the had changed the diagnosis. more vigorous efforts to identify it. We are impending odyssey of travelling to visit The researchers discovered 13 other now just beginning to identify individuals her brother and his family in the south patients with autism that had gone whose autism was overlooked or who were of the country for the first time. It was unrecognised in the hospital—about ten misdiagnosed in a previous era. If this only when the conversation paused per cent of the residents they evaluated. It research demonstrates that autism has that it became clear that Mary’s parents demonstrates how medical standards and always been present at roughly the same had other concerns. They asked societal attitudes toward the disorder have rate as today, it would ease worries of a so- hesitantly, ‘…and are you sure that shifted. called ‘autism epidemic’. Mary has autism? We were told Over the past two decades, estimates In 1994 the Diagnostic and Statistical previously that she had paranoid of the rate of autism have climbed Manual (DSM 4) of the American schizophrenia.’ Mary’s story is not twenty-fold. Autism was once thought to Psychiatric Association changed the unique. be an uncommon disorder. It is now criteria for autism. There were two

16 frontline Spring 2012 AUTISM

significant contributions: the inclusion of an unexpectedy popular new diagnosis, No one knows for certain what causes autism, although Asperger’s Disorder, and editorial genes and environment both appear to be involved. revisions that were meant to clarify the criteria for autism (but may have Researchers now broadly accept that there is no single inadvertently lowered the threshold for cause of autism. It has been linked to epilepsy, digestive its diagnosis). No one knows for certain what causes problems, immune or hormonal dysfunction, autism, although genes and environment mitochondrial function and more. It is now clear that both appear to be involved. Researchers now broadly accept that there is no single autism is a neurobehavioural disorder. cause of autism. It has been linked to epilepsy, digestive problems, immune or hormonal dysfunction, mitochondrial function and more. It is now clear that increasing way, in an attempt to explain inheritance, toxic exposure and clashing autism is a neurobehavioural disorder. children’s more moderate emotional and socio/sensory environments. Since autism was first identified, ideas social difficulties’. He is not alone in The view that there is no one about the causes have swung to and fro expressing concern that with this condition called autism goes some way between nature and nurture. The early lowered diagnostic threshold and to help account for the heterogeneity of focus on ‘refrigerator mothers’ resulted in resulting increased inclusivity, Asperger’s the condition. Autism spectrum a backlash and an emphasis on genetic has brought autism to the fuzzy disorders are just that, spectrum factors. In February of this year, Irish boundary with normal eccentricity and disorders. Research published in 2011 psychologist Dr Tony Humphreys wrote social awkwardness. There is growing suggested that where a child is assessed an article in the Irish Examiner , concern that some people are can determine what diagnosis the child questioning the assumption that autism misidentified as having the diagnosis of is given. ‘Clinicians at one centre may is a scientific fact. Dr Humphries Asperger Syndrome, when they really use a label like Asperger’s Syndrome to proceeded to suggest that the reported don’t. describe a set of symptoms, while those higher rates of autism among children of According to Dr Catherine Lord, of at another centre may use an entirely parents with careers in areas of science, the DSM-5 Neurodevelopment al different label for the same symptoms. maths and engineering, could be Disorders Working Group: ‘If the DSM-4 This is not a good way to make a accounted for by the fact that these criteria are taken too literally, anybody in diagnosis’, says the study’s lead children ‘will need to find some way of the world could qualify for Asperger’s or investigator, Dr Catherine Lord. defending themselves against the absence Pervasive Developmental Disorder—Not DSM 5 proposes a radical of expressed love and affection and Otherwise Specified’. Over-diagnosis reorganisation in how autism is defined. emotional receptivity’. creates the personal costs of stigma, Instead of separating classic autism from Such views were previously purported reduced expectations and unnecessary Asperger’s Syndrome, there will be one by psychodynamic theorists, such as interventions. The costs to society unified ‘autism spectrum’ disorder with Bruno Bettelheim (in the 1950s) who include the diversion of scarce a single criteria. The rationale is that blamed autism on the parents, educational and therapeutic resources there is no clear boundary between the considering them to be cold, logical, and away from those who need them. Many two and that autism is one disorder unaffectionate (e.g. ‘refrigerator parents of children with severe autism presenting with different levels of mothers’). After many years of research are in favour of stricter criteria, arguing severity. The system also has the autism is now known to be a that children who are most in need advantage of raising the diagnostic neurodevelopmental disorder that is should receive the available supports, requirements for the milder frequently genetic in origin. This archaic rather than those with milder symptoms. presentations of autism above those and unsupported hypothesis implicating Perhaps we should listen to what required for Asperger’s Syndrome in parenting as a causative factor in the individuals with autism are telling us. DSM 5. It is hoped that this will address development of autism has caused great Autistic author, Donna Williams, in her the issue of over diagnosis—however, upset among parents of children book called The jumbled jigsaw , has only time will tell. diagnosed with autism. Dr Humphreys’ presented a holistic model called autism While researchers grapple to reach article has been criticised by the as a fruit salad model. Williams proposed agreement on an arbitrary diagnostic Psychological Society of Ireland, Irish that the severity of someone’s autism classification system, we can but hope Autism Action and the neuroscientist, could be linked to their degrees of co- that people like Mary and her family Professor Simon Baron-Cohen, whose morbid communication, will never again be sentenced to a life of research was questioned in the article. sensory-perceptual, gut/immune, being misinformed, misunderstood and Dr Humphreys specifically referred to neurological integration, mood, anxiety provoked by a system that did not the distinction between diagnoses of and compulsive disorders a person recognise her autism, and a social and classic autism (as described by Kanner in inherited or developed, coupled with physical environment that has only 1943) and the new diagnosis of Asperger’s cognitive and learning style differences now been sufficiently adapted to meet Syndrome, appearing for the first time in and unusual personality trait collections. Mary’s needs. FL DSM 4 (1994). Dr Humphreys describes Williams suggested that these challenges the diagnosis of Asperger’s Syndrome as came about via different combinations Ruth Connolly is Principal Psychologist with ‘being used in an alarmingly and rapidly of pathways including genetic the Muiríosa Foundation.

frontline Spring 2012 17 CARING FOR

PEOPLE WITH simultaneously. The normal, usual accepted strategies for supporting people AUTISM AND on the spectrum are complicated by this additional factor, thereby adding a degree INTELLECTUAL of complexity to the care equation. Before outlining some strategies, it DISABILITY should be noted that a multidisciplinary therapeutic approach to care is of paramount importance if we are to be serious about making advancements in quality care , and not merely accepting a maintenance approach to care. Unfortunately, the latter is often the most we can aspire to because of limited funding which results in a reduced number of possible interactions from associated professionals such as occupational therapists, speech and language therapists, psychologists, psychiatrists, behaviour therapists and skills coaches. Ideally, a well-funded, multidisciplinary approach would be of great benefit.

Interdisciplinary care Support and assistance are sometimes available from some of the other professionals referred to above, but this is often only piecemeal because of the funding issues, and so we do not always achieve a coherent, integrated approach to the individual’s care. In reality, much of this work falls on the shoulders of social care workers and nurses involved in direct care. Supports for family members are also If you would help me, don’t try to change me to fit your world. conspicuous by their absence. While I am generalising, much work is also done and Don’t try to confine me to some tiny part of the world that you positive interventions are forthcoming, can change to fit me. Grant me the dignity of meeting me on however, I would suggest that a lack of my own terms—recognise that we are equally alien to each cohesive structures, difficulties with other, and that my ways of being are not merely damaged funding and the lack of a common vision for the person with autism and ID are, in versions of yours. Question your assumptions. Define your terms. essence, the greatest barriers to improved Work with me to build more bridges between us. care. This lack of vision is found at various levels, both societal and organisational. (Sinclair, 1992) Individual care organisations can take steps to address some of these issues good friend of mine, a Liverpudlian, In my experience of adult men on the within their internal structures, but the has recently been dating a lovely autistic spectrum who also live with financial aspect requires a complete ALeitrim woman. Inevitably, after a varying degrees of intellectual disability rethink on how we allocate funds, in order few months dating, the questions are posed (ID), there are a range of approaches, to use them to maximise the quality of : ‘ Any sign of a ring?’ ‘When are you two going attitudes and practices which, if not care offered. There is much talk within the to give us a day out?’ To which my buddy genuinely therapeutic, can serve to ensure health services of money following the responds with typical scouse humour: at least a safe and calm environment in patient and this would invariably go some ‘Steady on, it’s a marathon not a sprint !!’ which other, more therapeutic work can way to implementing a vision of how life Caring for someone with autism requires a be completed. Ultimately, the could be for the citizen with autism. similar attitude: it’s a marathon not a sprint. complicating factor in caring for people So, how do we care for the adult who Change is slow, gradual, and not immediate. with autism is the extent of ID also has ID and is also on the autism spectrum? Strategies to promote inclusiveness, present. It goes without saying that people No one individual is the same as the next, increased socialisation and to overcome with autism do not usually need such and so care has to be tailored to the societal barriers need to take the long-term interventions—this article is limited to individual. While we often ‘group’ people view. Routines and practices can only be addressing issues where autism and with autism, their place on the spectrum restructured in gradual, incremental form. intellectual disability are present means that their needs and abilities differ.

18 frontline Spring 2012 AUTISM

The care environment fully understanding this is easier said than adage in the area of spirituality that Generally speaking, structure and done. When attempting to change sometime’s life is about being and not organisation within the care residence something, a lot of preparatory work doing . We may be sucked into the illusion needs attention. Chaos, untidiness, needs to be completed. New tasks have to that it is only by doing things together that confusion, excesses of anything all tend to be broken down into smaller, more we form a bond or develop a relationship. complicate the situation, even leading to manageable tasks (depending on the Sometimes, just one’s silent physical outbursts of challenging behaviour. The key individual, of course). Some may handle presence is sufficient to foster a is to provide a low-arousal environment multiple instructions and commands quite relationship. Just an awareness of the other with a minimum number of stimuli to well, while others need time to process person’s physical presence, without words avoid overloading the senses. Routines and each piece of information. If we set out to being exchanged, may be sufficient to help rituals are important and cannot be change a behaviour, we need to first ask: is a person develop understanding and diminished in their significance for the this change necessary? What will the acceptance. In my own experience, a walk needs of the person with autism. Certainty benefit be for the person with autism? together (in absolute silence) can have as lends to a sense of security, and predictable Does the behaviour really need to be much therapeutic effect as a host of other routines allow the person with autism to changed or am I trying to make him/her interventions. gain some control over an otherwise alien like me/us? Clarity about what we hope to Of course, we cannot assume this is world. We need to remember that autism achieve, and why, need to be addressed sufficient to resolve all our issues, but it is has a large dysfunctional sensory aspect and communicated in whatever form more about our attitudes towards people which is often in conflict with the real, possible to those in our care. than about facilitating change. We will material world around the individual. How Most individuals in a care never ‘remove’ or ‘cure’ the autism in a they understand and interact with their environment will have several carers, person, which begs the question: ‘ what do surroundings will be coloured substantially maybe four, five or six. Although we hope to achieve in the process of our caring by sensory information—information that inevitable, this can be a cause for interventions?’ We will never make them differs from how the rest of us perceive our confusion, and coping with different faces ‘like us’ (nor should we). We will never get environment. and personalities may be a stressor for the them to behave as we would want them to Routine continues to be important person on the spectrum. No matter how (God forbid!). So what are our care despite the fact that we often try to reduce detailed and rigorous the established interventions designed to do? Keep them the rigid structures around the person in routine, no two people carry out a task safe, secure, clean, busy, in good health, order to facilitate more community identically. nutritiously fed? All very good and worthy integration. This is indeed a challenge— objectives, to some extent. The real supporting an individual to move beyond Communication difficulties challenge is to facilitate the potential for their comfort zone to access and integrate Communication skills will often be growth within each person. As our into the community while maintaining a extremely limited; functional speech may reference at the beginning alluded to, structure in which they can feel in control. or may not be present. In effect, this acceptance of difference automatically This conundrum is at the heart of the means the carer has to observe, interpret reduces the problems we may perceive as challenge to care. and even double-guess what the needs of needing to change. Another common difficulty in caring is the individual may be. But despite the To conclude, I am aware that much of that of disrupted sleep patterns. Again, low difficulty, communication does occur in what I have written may seem to be arousal, structured night-time routines can one form or another and the challenge for prescriptive, and in truth, no complete, go a long way to addressing this. A lack of the carer is to learn how to communicate one-fits-all system of care addresses all the sleep or a disturbed night may be at the effectively. There is a tendency (to which challenges to caring for people on the root of the challenges presented the we are all guilty to some extent) of autistic spectrum, who also live with ID. As following day. This vicious circle needs to assuming that if someone doesn’t speak always, getting to know the individual as a be broken, and routine and structure are they either have no preference to express unique person with abilities, preferences essential for this. A gradual slow-down in or lack the intellectual capacity to do so. If and a personality all their own will go a evening activities, followed by a shower or a person is encouraged verbally to long way to reducing the difficulties bath, and supper can help to facilitate sleep physically show the carer what they want, encountered. As has been said in the – but of course, this is not a panacea for all and if they are given it, a large degree of media recently, we need to remember that ills and disturbed sleep patterns remain a frustration can be removed. Watching many of those with whom we interact on challenge to us all. someone’s eyes can be of immense a daily basis (at home, in work, college or assistance: what are they looking at or school) may well be on the spectrum Managing versus changing toward? Body language can tell us so themselves. Caring for someone on the behaviours much if we read the signs. These are all spectrum remains a challenge and the I sometimes compare autistic behavior to challenges to the carer or the family of difficulties encountered require patience an errant computer programmeme. There is someone with autism who has limited and creativity, but it is a challenge we a logic to it, once you can understand it. communication skills, but it is work which should relish and not fear. FL Every behavior or function has a logic to deserves more of our attention. Ciaran Leonard it—if we can spot it. This is the challenge. We need to find the logic between the Relationship Reference action or behaviour and the thought Building relationships can also be Sinclair, J. 1992 (Personal Essay), in E. process of the person with autism. We have challenging, especially when it may seem Schopler and G. Mesibov, High heard much about cause and effect in the to be only a one-sided relationship, or one functioning individuals with autism . New world of behaviours that challenge, but of unequal contributions. There is an old York, Plenum Press.

frontline Spring 2012 19 DEVELOPING RELATIONSHIPS THROUGH PLAY: The Early Start Denver Model for Young Children with Autism (ESDM)

Mitchell Fleming looks at one model of play-based intervention for young children with autism.

utism Spectrum Disorder (ASD) preschoolers with autism aged 24-36 children to seek out others for is a neuro-developmental months, which combines the interaction during favourite activities. Acondition that is characterised development of responsive Rogers and Pennington’s ‘Model of by impairments in social interaction, relationships with behavioural Interpersonal Development in Autism’ communication and repetitive teaching techniques. The Model aims posits that infants with autism are behaviours. The condition affects to reduce the severity of autism impaired in their ability to imitate and almost one in every 100 children. Over symptoms and accelerate children’s attune with the feelings of others. This the last few years there has been an progress in all areas of development, creates barriers for the development of increase both in the early diagnosis of but particularly cognitive, social- an understanding of emotional sharing ASDs and in the range of effective emotional and language development and intentional communication. interventions available for children. In so as to enable children enjoy a better Intervention in this model is directed at Ireland, parents of young children are quality of life. addressing these critical impairments in entitled to an assessment of their development, though fostering child’s needs, but their children have Foundations emotionally rich relationships with no automatic entitlement to receive ESDM brings together a number of responsive, sensitive others who attune therapeutic interventions. One of the complementary approaches which to and coordinate with the child’s consequences of the ever-decreasing focus on teaching skills that follow emotional state. The ‘Social Motivation health and education budgets is that typical patterns of child development. Hypotheses of Autism’ holds that the resources are now being concentrated Each of these approaches views autism reason people with autism spend less on the provision of statutory as resulting from impediments in time attending to and interacting with ‘assessments of need’, and not on infants’ early interpersonal others is because of their lack of effective interventions and supports. experiences, which creates barriers to sensitivity to social rewards early in life. This is leading to increased frustration social-communication development. This results in a failure on their part to on the part of both parents and service The original Denver Model views attend to and engage with others, providers. autism as resulting primarily from a which (over time) leads to people with This article looks at one child- failure in the area of social- autism becoming more and more centred, play-based intervention for communication development. removed from the social world around young children with autism. The Early Accordingly, intervention is focused on them. Interventions in this model are Start Denver Model (ESDM) was care givers building close relationships aimed at increasing the salience of developed for toddlers as young as 12 with children using lively, dynamic social rewards so as to enhance the months. It is an adapted extension of interactions. These interactions involve child’s social attention and motivation the original Denver Model for a strong positive affect to encourage for social interaction.

20 frontline Spring 2012 AUTISM

These approaches are combined Complex developmental skills that experiences with another person, to with Pivotal Response Training (PRT) are usually impaired in youngsters draw the child’s attention to social to form ESDM for teaching children with autism, such as joint attention, cues, to make such cues rewarding for with autism. PRT is based on the imitation, language and symbolic play, the child, and to foster the child’s principles of applied behavioural are taught by embedding them in motivation to continue such activities. analysis (ABA) and was developed to highly preferred activities. These skills Therapists use these techniques to elicit optimise children’s motivation to are built up from the simplest steps to social and communicative behaviours interact with adults and engage in the most complex, according to their from the child that are as close to those repeated learning opportunities. developmental sequence. Complex evident in typical development. skills, such as eye contact, are not The ESDM curriculum taught in isolation but are linked with Evidence of effectiveness ESDM involves a developmental, other skills such as play and language, A number of papers have been broad-based curriculum that addresses as this is what usually happens for published in peer-reviewed journals the areas of imitation, joint attention, typically developing children. showing the effectiveness of the social interaction, play, receptive and original Denver Model or ESDM as an expressive communication, cognition, Interdisciplinary team intervention for children with autism. self-care, and gross and fine motor The ESDM is designed to be This article focuses on just one of these skills. Each child is evaluated using implemented by a team of publications, owing to its exceptional the curriculum checklist. Based on professionals and family members. quality in the field of autism this assessment, individual learning The team leader and parents are at the intervention research. Geraldine objectives are devised to focus on the hub of the treatment team and these Dawson, Sally Rogers and colleagues in child’s and family preferences and are supported by other professionals, the US conducted a randomised, interests. Daily data sheets are used to such as special educators, controlled study to investigate the record progress. Initial objectives are psychologists, SLTs, OTs, behaviour effectiveness of the ESDM as an reviewed and new ones set every analysts and physicians. intervention for toddlers with autism. twelve weeks. If progress is slow, the Forty-eight children with an ASD therapist uses the ESDM decision tree Teaching procedures between 18 and 30 months were to enable him or her to make Children’s objectives are taught randomly assigned to one of two necessary systematic changes to the through play activities. During a groups: (1) an ESDM intervention teaching procedure. typical session the child is given many group, or (2) commonly available The language intervention opportunities to acquire several community interventions (control approach used comes from the objectives from different group). The ESDM received yearly science of communication developmental areas. The ESDM uses assessments, parent training, 15 hours development, rather than from teaching practices and procedures per week (on average) of the ESDM behaviour analysis; it recognises that melded together from three intervention from clinicians, and a verbal language develops from intervention traditions: ABA, PRT and further 16 hours per week (on average) nonverbal social-communication the Denver Model. Within ESDM, of ESDM intervention delivered by behaviours as well as speech sounds. basic practices of effective teaching parents. In addition, children received People use verbal and nonverbal used from ABA include: functional whatever community services the communication to coordinate their assessment, delivering teaching within parents chose during the two years. activities and to share their inner lives an antecedent-behaviour-consequence The control group received yearly involving intentions, desires, sequence, capturing the child’s assessments with intervention interests, thoughts and feelings. The attention, prompting, shaping, recommendations and were referred for ESDM intervention provides multiple chaining, fading, and managing intervention to commonly available and varied communicative consequences. Elements of PRT community providers in the region (i.e. opportunities and elicits many included are: child choice, turn taking, greater Seattle, Washington). Children communicative behaviours, both reinforcing attempts, using reinforcers were evaluated by experienced verbal and nonverbal, from the child that have a direct natural relation with examiners prior to intervention, one during each intervention session. The the child’s response or behaviour, and year after the start of intervention, and range of communicative, or pragmatic interspersing acquisition and again after two years or at 48 months functions, is carefully developed so maintenance skills. The remainder of of age—whichever yielded a longer that a child not only requests an the teaching practices used come from time frame. The examiners were activity, but also protests, greets the Denver Model. These focus on the unaware of the intervention groups familiar adults, shares attention, and affective and relationship-based that the children had been assigned to comments or narrates during an aspects of the therapist’s work with and this helped prevent the possibility activity. Spontaneous communication the child, the emphasis on of examiner bias influencing the is carefully supported and the child’s development of play skills, and use of results. The ESDM detailed communications exert much control communication intervention intervention manual and curriculum over interactions and activities, which principles from the fields of were used with the ESDM intervention show the child the power of communication science. group. One or both parents were communication and ensure that When combined, the techniques provided with parent training during communication is strongly outlined above are designed to engage semi-monthly meetings. Programme reinforced. the child in positive emotional integrity checks were carried out to

frontline Spring 2012 21 AUTISM

There are no comparative studies that show that ESDM is better than The original Denver Model views autism as resulting primarily other effective approaches for children with autism, so it is not possible to from a failure in the area of social-communication provide information on which development. Accordingly, intervention is focused on care approach is ‘best’. However, it is unlikely that any one approach will givers building close relationships with children using lively, suit all children with autism. What is needed are intervention approaches dynamic interactions. These interactions involve a strong that fit the family’s preferred way of positive affect to encourage children to seek out others for interacting with children, a teacher and a therapist’s most successful way of interaction during favourite activities. interacting with others, and a child’s own profile.

Conclusion ensure that clinicians implemented the The ESDM has clear ties to the The main principles of the ESDM result ESDM intervention with a high level naturalistic behavioural interventions from a sophisticated combination of (85% +) of fidelity. Results show that like PRT, incidental teaching and evidence from studies of early autism, there was a significant difference milieu teaching, all of which also use a studies of typical infant and child between the two groups in IQ, child-centred, natural language frame development, and studies of learning. adaptive behaviours (e.g. delivered using behavioural teaching The ESDM fills a current need in the communication, daily living skills, strategies. The ESDM differs from these, field for a rigorous, evidenced-based socialisation and motor skills), and however, in the emphasis placed on intervention that uses a developmental autism diagnosis following two-years affect and quality of relationship. relationship-based, and data-based of intervention. Two years after Finally, the ESDM is similar to the approach to address the many starting intervention, the ESDM group Lovaas/UCLA Young Autism Project developmental needs of young showed an average increase in IQ of approach, in so far as both have a children with ASD and the needs of 17.6 points compared with 7 for the broad-based curriculum, use intensive their family. FL other group. Those in the ESDM group behavioural approaches, and collect showed greatest progress in the areas of and use data to monitor progress and References: expressive and receptive language. The inform decision making. It differs from Rogers, S. J. and Dawson, G. 2010. Early ESDM group made steady progress in the Lovaas approach in the child- Start Denver Model for young children the area of adaptive behaviour over the versus adult-centred teaching approach with autism. New York, NY: course of the research, while the used, the focus on child positive affect, Guildford Press. control group displayed an 11.2 point the focus on teaching communication Dawson, G. Rogers, S. Munson, average decline in standard scores on embedded in ongoing social J.,Smith, M. Winter, J. Greenson et the Vineland Adaptive Behaviour interaction and on nonverbal al. 2010. Randomized controlled Scales. Children in the ESDM group communication as a precursor to trial of an intervention for toddlers were significantly likely to have verbal communication and in its use of with autism: The Early Start Denver improved diagnostic status following a curriculum based on developmental Model. [Electronic version]. two years of intervention, compared science. Pediatrics, 125 , 17-23. with those in the control group.

Similarities and differences with other interventions The ESDM most closely resembles other popular autism interventions approaches that place a strong emphasis on responsive interactions and developmental orientation. These include DIR/Floortime, Relationship Development Intervention/ RDI, SCERTS, Marte Meo and Hanen. All of these interventions are built on evidence about typical social- communicative development. The ESDM uses more clearly stated behavioural techniques than the other approaches, it is more data driven, and it covers all developmental areas, while most of the other models focus on social-communicative development.

22 frontline Spring 2012 PARENTING A TEENAGER WITH AUTISM —what Stephen is teaching me!

Avril Webster describes how she is learning to cope with the challenges of puberty in tandem with her son Stephen.

arenting is a tricky subject at the reactions. And we have tried to support best of times, with constant ups him with preparation and avoidance of Pand downs. The toddler and certain trigger noises. It had settled teenage years seem to be particular down to a certain degree and he could highlights for testing of parenting skills! manage many new environments well. neighbour was telling me about the Stephen (who has a rare chromosomal However puberty and all those amount of food her teenagers were disorder and autism spectrum disorder - hormones have sent poor Stephen’s eating and it got me thinking that ASD) is the eldest of my three children, system into sensory overload again. maybe Stephen’s waking up might be so I haven’t done parenting a teenager Things that we thought he had got used that he is hungry. before. There is no doubt that Stephen’s to are suddenly causing him distress. He Stephen has always been a ‘picky’ autism and intellectual disability add had been pretty good at getting his eater and he does not like eating. extra challenges, but sometimes I am so haircut in the last few years and had Anyway I started giving him some extra fixated on his disability that I forget gotten used to the noise of the clippers snacks during the day and it seems to be that Stephen is growing up and and scissors. Suddenly it seems like the helping. The other thing I have used is experiences many of the same things as noise is hurting him and he cannot melatonin, which really seems to help a ‘normal’ teenager. tolerate them near his head at all. From settle his sleep pattern. my experience, it seems sensory Sensory Processing Disorder processing disorder spikes during Meltdowns One the things that every parent of toddler and puberty/pre-puberty years. I was also telling my neighbour about child with ASD needs to know is that Stephen is 14 and I know I have a few Stephen having complete meltdowns puberty can set off new sensory triggers. years to go with teenage years, but I am and that in many cases I could not Like Stephen, many children with ASD looking forward to (hoping) this sensory understand what was upsetting him. I have sensory processing disorder— stuff settling down again in the future! was busy analysing that it must be Stephen’s senses do not ‘work together’ Stephen’s frustration because he cannot the same as ours. He feels, sees, hears, Sleep express himself with words. This may tastes in a different way than we do. Stephen has never been a good sleeper, very well be a cause, but my neighbour This also affects his movement and but recently he is waking at various reassured me that many ‘normal’ balance. All areas of life are impacted times during the night and early in the teenagers also have meltdowns over from eating (only eats certain textures), morning. From talking to other parents, what seems like nothing. to sleeping (he needs deep compression and from what I have read, we are not hug to help relax him at bedtime), to alone (I know it does not fix it, but it Lessons how he learns (he needs a quiet corner). really helps to know others are I am learning that, yes, having a teenage He cannot ‘screen out’ noise like we do experiencing the same thing). It seems child with ASD does pose lots of and gets overwhelmed in busy noisy many young people with ASD find it challenges, but so does having any environments. From what we see every difficult to move smoothly through the teenager. Stephen is teaching me about day, there is no doubt that certain cycle of ‘normal’ sleep. Needless to say, patience, understanding and active noises cause Stephen distress and, I lack of quality sleep affects not just listening. Stephen has a great sense of think, some form of pain. Examples of Stephen, but the whole family. humour and he also reminds me of the this would be a baby crying, a dentist’s I was chatting to one of my importance of laughing and keeping drill, a hand dryer in a public toilet and neighbours about sleep, or lack of it, things in perspective. many more. when it struck me that I need to think On the positive side of puberty, I Since we became aware that about what ‘normal’ teenagers do and have to share with you that Stephen has Stephen’s senses are different than ours, that all of Stephen’s behaviours are not acquired more language from age 12 to it has helped us understand some of his necessarily linked to his disability. My 13 than at any other stage of his life! FL

frontline Spring 2012 23 n the earlier days little was known about the autistic conditions themselves, and Ivery few parents and professionals knew much about evidence-based practices. Not a good idea. Philosophy, theory—not a lot of either was about. Both exploded in Ireland pre-and post-turn of the century (remember the Millennium???). Regardless of the current economics, we still have these critical ‘resources’.

Philosophy— Know the condition and how it is affecting the individual; provide intensive early intervention from time of diagnosis; follow person-centred planning values; think age-appropriate, natural settings, and community-based; focus on functional life and social skills; do not place a ceiling on expectations.

Theory —Understand the function of behaviours before intervening; teach through behaviour analytic strategies paired with visual organisation supports; teach pivotal skills; identify and use motivators; include choice options; base curriculum on individualised assessment outcomes. Regardless of the level of funding, we can incorporate these to some extent into the educational and support plans for children and adults on the autism spectrum. Focus on HERE WE the most critical elements when identifying goals—those that (when learned) will generalise to other areas, fostering on-going progress. Not only at the start, but all the GO AGAIN way through to university, insure good basic learning habits are acquired and followed and work towards reducing identified barriers to learning and self-sufficiency. Limited resources are new to many who came through the Make learning sufficiently challenging, rewarding and fun! Celtic Tiger years, says Rita Honan . But those of us with grey around the temples recall not only lack of funding, but The real world So, back to the real world. How do you do more damaging, lack of knowledge of how best to teach these things without skilled manpower: and support those with an ASD. Actually, few professionals teachers with specialised training and materials, speech and occupational in Ireland even knew how to recognise or diagnosis Autism therapists, psychologists, behaviour analysts, and Asperger Syndrome a short 15 years ago! The numbers tutors, SNAs? You prioritise, you read and learn, finding the most relevant of special classes for students with Autism were in the instructional directions for the most single digits, there were 8 students per class with no SNAs, important aspects of the curriculum. If you’re a parent, you speak with other none of the classes were in mainstream schools and none parents, you advocate as much as you can of the children were in mainstream classes. So, lots of for your child on the local level (School, SENOs, ASD or CAMHS team), and at a progress has been made, but now, how do we cope in national level (DES, HSE, Ministers, TDs). these lean-again times? History is a good teacher—of what You’ve been doing this anyway. Unless you were lucky, you’ve already been faced with to do, and what not to do. Let’s learn from it to minimise clinical positions being left unfilled (in some the inevitable damage that will be done by the restrictions cases for years), and with some good being placed on necessary resources. teachers with good will but little background in this specialism. What’s new is that the

24 frontline Spring 2012 AUTISM This is not a time to try new things or to advocate for approaches that have not been proven to be effective. We need the best bang for the disappearing buck. Parents in Ireland have spent thousands engage with that what they’re doing has of euro on some ‘interventions’ for their child that have no scientific validity for that client and they must also submit ‘progress’ reports to secure on- support whatsoever. Anecdotal reports are not ‘evidence’. going funding. This reduces the likelihood of financial waste on unsuccessful approaches or services that those with an ASD or their parents find funding not only to maintain the level Anecdotal reports are not ‘evidence’. aren’t helpful. This system has its of service delivery that existed is Results of well-designed and drawbacks, of course—as any markedly reduced, but that the professionally peer-reviewed studies are. government programme does—but it’s likelihood of future developments is Check the facts. Ask for references in the something to consider and possibly markedly diminished. Scary stuff. published, peer-reviewed literature for advocate for to make the best use of the Materials and manpower, keeping up what anyone recommends for your limited funding being imposed on you. with international findings and best child. I recall once asking this of a well- practices are out of reach. This is the advertised Institute for Light Therapy, Self-care price to be paid for the economic follies and when I never heard back from them, So, it’s tough times, but times are always of others. that told me what to think of this highly tough for those affected by an ASD, acclaimed (by themselves only whether you have one, are the parent of Improved practices apparently) ‘intervention’. If you have a someone with one, or work with folks on The push for improved practices and bit of money to spend, get someone the Spectrum. So, put some self-care services should come from within the qualified, a Board Certified Behaviour strategies in place for yourselves. You system and professionals should never Analyst or equivalent, to work need it. You deserve it. You are the best be satisfied with what they have been collaboratively with teachers and bet for the future success of these kids offering, always striving to improve. families to develop personalised, and young adults. Two steps forward, Progress in disabilities in all English evidence-based teaching strategies for all one step back. The bankers and some speaking countries and probably involved to follow. Focus on what’s most government officials have put you in the throughout the world, however, has important and limit the number of goals back step right now. Don’t let them keep always come from parents. Pity, as at any one time to allow for an intense you there. Eyes forward, heads up, and parents are already under a great deal of focus. As one goal is met, add another keep the pressure on them to do the stress. Society should be making it easier, and keep moving on. right thing and support everyone in need not harder, to parent a child with a on the Autism Spectrum. FL disability or to be a person with an ASD. Other countries What you can do is to get the available Florida, where I spend most of my Dr. Rita Honan is a Registered Educational professionals to stand with you; to winters now that I’m closing in on the and Counselling Psychologist and Board support you in your efforts to get your free travel pass, has an interesting system Certified Behaviour Analyst in Private piece of what’s left of the pie. Form a where that State actually allots a set Practice in Dublin, focusing on the diagnosis team around your child as best you can, amount of money to a person with a and support of those with an ASD. She also understanding that the availability of disability based on their stated needs. teaches on numerous postgraduate courses in members will wax and wane. That The individual and/or family then gets the School of Psychology, Trinity College. She doesn’t have to be a bad thing if you’re to decide how to spend it! Who to hire, is trying to retire to her apartment in Florida, able to draw on everyone’s strength what to focus on, etc. Evidence must be but loves her work and Ireland too much for when they are on board. Of course, not given to the State from providers they that to happen any time soon. every parent has the emotional or physical energy or the time to do these things. No parent should be in the position to need to do so, but that’s where we are. Get other family members and friends to lend a hand, make calls for you, implement interventions from time to time, etc.

Using scarce personal resources nd a little insecure The role of philosophy and theory I am selfish and impatient a becomes more critical in these lean d I am out of control current times and both point us to I make mistakes an evidence-based practices. This is not a nd at times hard to handle time to try new things or to advocate for A approaches that have not been proven my worst But if you can't handle me at to be effective. We need the best bang t my best for the disappearing buck. Parents in Then you don't deserve me a Ireland have spent thousands of euro on Marilyn Monroe some ‘interventions’ for their child that have no scientific support whatsoever.

frontline Spring 2012 25 GETTING STARTED Mirena Vladimirova tells how a film she saw as a teenager has influenced and helped her as she fought for services for her autistic son in her hometown of Sofia, Bulgaria.

any years ago, when I was 15, bring our kids without the need to the same age my autistic son is apologise for who they are, what they do Mnow, I saw an amazing movie or not do—a place where we could share which, without my realising it, shaped our fears and doubts. Nobody teaches us forever my way of thinking. The film was to become parents—especially how to called Gandhi . It was directed by Richard parent autistic children. So we were Attenborough with Ben Kingsley starring looking forward to the opportunity to as Mohandas Karamchand Gandhi. It create a place which would provide the took me years to realise how deep and services needed for children, adolescents wise were the thoughts and reflections of and adults; training for parents, care this incredible film. givers, siblings; help for single mothers ‘You must be the change you want who had a child with ASD; and to see in the world’ , Gandhi once said. information for treatments, diets, healthy Nothing was going right for me as a living etc. do no great things; only small things, mother of an autistic child until my ‘ First they ignore you, then they but with great love .’ Now, five years friends and I—parents of autistic laugh at you, then they fight you, then later, I can still feel it’s not only a wise children—until I truly understood the you win.’ — another famous phrase of message but it is a state of mind and a meaning of that statement. Mahatma Gandi which for me symbolises scale of devotion. Back in 2003 there were services for the process of searching for a place in In order to make the services in the special people in Bulgaria, but children Sofia suitable for autistic people. It took centre free of charge we gifted the centre and adolescents within the autistic more than three years to justify the need to the municipality. It is now owned by spectrum were left behind because of for this kind of service, to prove that even the government, but all the special their hyperactivity, challenging behaviour in a period of tough reforms and activities, like horse riding, summer and and difficult communication and all that economic difficulties we still needed to winter camps, weekly outings and can present for people diagnosed with an do everything possible to ensure people community gatherings are only possible Autistic Spectrum Disorder. Parents whose with disabilities could live their lives with because of the financial support of children were low functioning, and also decency, dignity and respect. It was not Association Autism. Sponsors continue to those with hyperactivity, could only easy to explain that autism is not a support the parent association, enabling access an hour or two a week for their lifetime sentence and that effort invested the development of more services for children at special social rehabilitation in the children would make them less of children and adults with autism. and integration centres. We needed a social burden in the future. We found Sponsorship has enabled the Association services and we needed them very soon. people who shared the same vision with to provide training and seminars to I began meeting more parents whose us. What appeared an impossible mission hundreds of parents and professionals children were autistic and we decided to became a reality. We found sponsors, throughout the country. At the same time form an Association. It was May 2003 people who trusted us and raised the our professionals were assisted to take part when the Association Autism was formed. money to rebuild the facility given by the in different autism-related events which Its mission was to enhance the quality of municipality. enhanced our knowledge of the most life of individuals and their families In March 2007, with the kind support promising autistic approaches and touched by autism spectrum disorders. of our sponsors, Association Autism interventions. The financial support from Our main objective as a parent NGO was established the first Bulgarian Centre of our friends and sponsors has made it to promote the civil rights of children Social Rehabilitation and Integration of possible to provide the best environment and adults with autism in Bulgaria and to people within Autistic Spectrum for the children so they can enjoy the help them overcome their social isolation Disorders. This became the first equipment in the sensory room, benefit and live successfully in the community. specialised centre in the country which through computer learning and acquire The Association’s first task was to offers autistic people extensive skills during the individual and group create a community awareness of Autistic opportunities for learning through sessions in the specially designed therapy Spectrum Disorders within Bulgarian physical, occupational, speech, art, music, rooms. society by disseminating information dance and equestrian therapies. All the The motivated staff team reward each among parents and professionals about specially tailored individual programmes step of accomplishments of the student, available evidence-based are designed to incorporate the no matter how small they may be. Thanks interventions. The second Task was to development of communication, self- to their efforts, some children have open specialised centres for autistic help, independent and social and successfully joined mainstream children and adults which would recreational skill of children and kindergartens and schools. We share in welcome people with autism, no matter adolescents. The motto chosen by the the accomplishments of the children, for how serious their condition is. We staff members of the centre is a quote example, their first sounds, and their first dreamed about having a place we can from Mother Teresa of Calcutta: ‘ We can words. Thanks to the Irish organisations

26 frontline Spring 2012 AUTISM

represented in Bulgaria by Mr John sector. The European Software Institute The project is now coming to the end. O’Gorman, we were able to equip the Centre Eastern Europe (ESI CEE), in Eight IT companies provided IT job Centre with an outside playground collaboration with Association Autism, opportunities including apps for which helped our children to learn while developed a project ‘Development and functional testing, content management playing. We were also able to visit Piloting a Model for Occupational systems, digitalisation and processing of different centres and schools in Ireland Training and Employment of people documents, database filling, and providing services to autistic children with ASD in the ICT Sector’. The company social activities. Our hope after and adults. These visits were strongly initiative expresses the willingness of IT the pilot project ends is that some of the motivational. A team of Irish companies ( members of BASSCOM, the adults will be able to sign official long professionals also took part in training Bulgarian Association of Software term contracts with the companies. psychologists, special teachers and Companies) to provide employment for ‘The difference between what we do speech therapists working with people persons with autism in the IT sector. The and what we are capable of doing with ASD in Bulgaria. The sharing of project is co-funded by the EC. would suffice to solve most of the knowledge and experience is still highly Young persons with autism and world’s problems.’ Association Autism is appreciated among different specialists. potential employers were trained how to a small organisation, part of the Bulgarian For three consecutive years, starting work together in the real business Association of People with Intellectual in 2009, we have implemented three environment. After completion of the Disabilities (BAPID). We keep on special projects for adults with autism training, the youths have been provided dreaming for the future of our children. called ‘Learning for life’. The different with employment in Bulgarian ICT We try to be the change and make the parts of the projects included: social skills intensive companies. The workshops difference. We move the things forward. workshops, logical thinking workshop, also included training for the employers There will always be more to be done, but arts & crafts workshop and puzzles. Each on how to work with persons with the efforts and the time devoted are year the project was joined by new autism, both theoretical and practical IT worth every single second of it. unemployed autistic adults who were not training for persons with ASD. All Recently I travelled to India, to the in receipt any service or specialised persons with autism and experts dealing land of the extraordinary Gandhi. I treatment support. with the integration and rehabilitation visited a special school in Pondicherry. I In August 2011 the Centre was of people with ASD received certification met devoted parents and creative enlarged with a new additional facility in computer literacy. professionals working hand-in-hand providing special support to 20 adults The project provides people with facing similar problems and challenges as with autism. The clients are able to enjoy autism the opportunity to move away all of us do. In my eyes they were their new cooking and fitness classes from the care-home environment overtaking hundreds of obstacles each there, as well as computer, social skills during the day to a professional and day. I visit many countries to learn what activities, arts and crafts workshops. personal development environment in they do with regards to autism. The most The efforts to develop different the IT sector. The companies hiring impressive experience for me is that all of workshops or events for adults with persons with autism expect positive us parents of special children, no matter autism made by the Association Autism changes in their employees’ perception where we are (Bulgaria, Ireland or India)— logically led to a European project, with of ASD, through pro-activity in the we share the same dreams and fight the regard to the recruitment of people community interaction to pro-activity in same fights for the rights of the people within the autistic spectrum into the IT organisation goals achievement. with disabilities and their families. As all of us parents and professionals share the difficulties of raising and teaching the people with autism, we also want to celebrate together each day their unique world of existence, their different ways of thinking, talents and skills. By creating autism awareness among people in our countries and assuring the quality of the services available for the individuals with autism, we can be sure that they will be surrounded with more understanding, love and support throughout society. FL

Mirena Vladimirova graduated from a Russian language school and later studied literature for two years in Bulgarian and Russian Universities. Mirena later went on to study Chinese Language and Literature in Beijing University. Her post graduate studies also included an MBA, following which she worked for ten years in Beijing. She has been active in developing autistic specific services in Bulgaria and has been the chairwoman of Association Autism since 2003.

frontline Spring 2012 27 Supporting community living for adults with Autism Spectrum Disorders (ASD) and Developmental Disabilities (DD)

Living and working with people with autistic disorders is not like living and working with anyone else with or without disabilities. Past rom early childhood John didn’t experiences of social interaction and a desire to help are not sufficient speak, he was obsessed with Fspinning objects and he preferred guides. It is essential to understand the nature of autistic conditions. to spend time alone away from other People with these disorders, because of their social impairments people. John has autism, and his story cannot meet you half way. You have to make an imaginative leap into is not an unusual one in the context of adult disability services in Ireland. their world and try and see things from their point of view. Difficult behaviours described in early (Lorna Wing, 1995) childhood and adolescence exacted a heavy toll on John’s family life, and well-intentioned disability services and Donna Williams and a growing understanding of the unique perspectives guided decisions for him to move away number of online blogs from people on that accompany autism. from his family home and into the spectrum, how people with ASD There may be many reasons why there institutional care. Unfortunately, 30 might experience the world differently to is a link between autism and challenging years ago autism spectrum disorders us ‘neuro-typicals.’ Autism can be behaviours. There is a strong association (ASD) were almost unheard of in considered as a different way of being. of stress and anxiety across all ages of Ireland, and people like John were Autism is referred to as a spectrum people with a diagnosis of autism (Davis et largely misunderstood. Life in a large disorder to signify a diverse group of al 2011). Indeed many of the behaviours congregate setting for the next 30 years people who share the same core associated with autism may be expressions only served to validate his identify as characteristics. People with ASD have of anxiety: repetitive, ritualistic someone who was severely challenging. difficulties with social communication, behaviours, strong desire for routine, Responses to his distress were often flexibility in thinking and behaviour as obsessive interests, hoarding, lining items paternalistic and usually consisted of well as sensory processing difficulties. up, sleep problems, gastro-intestinal negative consequences, including: Approximately 75% of individuals with problems, eating problems, avoidance, limited access to the things he enjoyed, autism also have a learning disability. The self- isolation, self- stimulatory behaviours limited opportunities and choices, diversity of those on the spectrum is etc. Autism is associated with levels of restrictive practices, and high rates of captured well by Stephen Shore’s famous anxiety similar to that of people with a anti-psychotic medications. quote: ‘If you meet one person with diagnosis of clinical anxiety. In the past decade there have been autism, you’ve met one person with Understanding fear, anxiety and stress can reports of a dramatic increase in the autism.’ help us understand why someone might prevalence of ASD from .25 cases in Many people will experience engage in challenging behaviours. Many 1000 (DSM IV, 1994) to 1 in 110 people challenging behaviours while living with people with autism have difficulties (CDC, 2009), with the rate increasing or supporting individuals with autism. interpreting their emotions, and may by 10-17% per year. More children Challenging behaviours can refer to self- express and respond to their emotions being diagnosed with autism can be injurious behaviour (such as head disproportionately. Resultant challenging partly attributed to a broader concept of banging, biting), behaviours directed behaviours can be explained as panic or ASD, and to better identification and towards others (such as hitting out, stress reactions. understanding of autism. Though kicking etc), property damage (e.g. We know that people with autism also prevalence rates are somewhat breaking furniture) or restricted and experience the physical world differently controversial, it is generally accepted obsessive interests (e.g. fixing or collecting than others do. Many people with autism that more people with ASD will be objects) that impact on ordinary have unusual responses to sensory stimuli; entering adulthood, and that there will community living. People with autism are first-hand accounts of people on the be increased demand for appropriate more at risk for a variety of challenging autistic spectrum describe hypersensitivity supports and services. This presents a behaviours and can experience the full to certain sounds, touch, smells, tastes or significant challenge to services, and range of mental health disorders. The movements. Particular fascinations or requires greater attention to the specific emotional and physical impact on the aversions to certain sensory stimuli in the needs of adults with autism if we are to people supporting an individual with environment may explain some of the plan and provide for effective supports challenging behaviour can be enormous. more ‘bizarre’ behaviours associated with and services. The quality of their lives Outcomes for the individual can include: autism, such as resistance to eating certain will be determined by how we, as a serial crises, placement breakdowns, foods, extreme reactions to background community, understand and respond to admission to specialist units, and use of noise, or fascination with movement. them not just as people, but as people high levels of psychotropic medications Some people with autism may find it with an Autistic Spectrum Disorder. to manage behaviours. However, these difficult to process sensory information We have learned from first-hand consequences can be managed and from more than one channel at a time— accounts of people like Temple Grandin reduced if we develop a greater level of for example, they may be able to either

28 frontline Spring 2012 AUTISM

‘look’ or ‘listen’, but not both together. We Supporting individuals with factors, communication and social also know that certain types of Autism/DD in community settings environmental factors. The purpose of a environments may be a source of stress for Our job is not to fix people but to design detailed comprehensive functional individuals with autism. There is evidence effective environments. (Rob Horner) assessment is to understand the factors that sensory hypersensitivity is associated causing the person’s distress. with higher levels of anxiety (Baker et al All people with developmental Challenging behaviours always happen 2007), and a heightened perception of disabilities, including those with autism for a reason and are usually signs that visual sensory input in the environment and challenging behaviours, must be the person is stressed and not coping in can be exhausting: recognised and treated as equal citizens, their environment. Trips to the supermarket are always a have equal access to services, and be It was clear from his behaviours that chore. There’s too much mental supported to live in a manner that best John was unhappy in his service. He stimulus. I have to look at every shape meets their needs. This involves getting to lived in a crowded, noisy environment and texture. Every price and every know the person, their unique qualities, and attended another loud, crowded arrangement of fruit and vegetables.… building on their strengths and providing group service during the day. There were I’m just really uncomfortable opportunities and choices that help each high rates of severe challenging (Daniel Tammet). person lead a fulfilling life. behaviours at busy meal times, when In the last number of years we have things didn’t happen on time, when Part of the social communication had the opportunity to support families others around him were stressed, when difficulties that occur with autism include and staff working with adults with people didn’t respond to his requests, difficulties interpreting other people’s ASD/DD transition from unsuitable when activities were cancelled and staff behaviours and intentions. Having congregate settings into individualised rosters changed. John wanted peace and difficulties inferring meaning from social community homes. This was an quiet, help when he needed it, more of cues can make social situations terrifying. opportunity to set up individualised the activities he enjoyed, and more time If you can’t properly judge how another wraparound services that catered for the with the people with whom he had built person is feeling, or understand how they unique needs of each individual. Most of relationships. Therefore, rather than might behave, then this makes other these transitions involved either single focusing on fixing problem behaviours, people constantly confusing and occupancy homes or small group homes, positive behaviour supports focused on unpredictable. Temple Grandin, writing of and outreach individualised the need for the people around him and her experiences as a person with autism, employment/day programs instead of for the physical environment to change likened trying to understand the social centre-based day services. The aim has to meet John’s needs. world as comparable to being an been to set up person-centred Recommendations to support John anthropologist on Mars. Difficulties individualised services, to reduce included rescheduling to avoid problem processing language, including delays in individuals stress and their challenging contexts, finding out what made life being able to process what others are behaviours, and fundamentally to worth living for John and giving him saying can further contribute to this improve their quality of life. The more of this, helping him cope with the confusion and anxiety. Consequently, subsequent benefits have been significant sensations his emotions caused and difficulties developing relationships can reductions in challenging behaviours and understand why he felt that way and then lead to loneliness and isolation, stress, improvements in health, reduction teaching him alternative ways to further diminishing a person’s ability to in psychotropic medications, improved communicate his needs. These strategies cope with stress. family contact and relationships, more were designed to reduce stress and Simon Baron-Cohen describes how opportunities and choices, positive replace or make the need for challenging people on the spectrum have a strong drive interactions with carers—and the behaviours obsolete. But changing to systemise, to find patterns or rules in the subsequent development of positive existing supports can be particularly social and physical environment. This perceptions of individuals beyond the difficult in the context of autism and in extreme need for sameness may be a way label of challenging behaviours. the context of large institutional settings. for people with autism to make sense of A substantial evidence base in Positive John had rules and patterns that were the world. It is common for people with Behavioural Supports (PBS) emerged in strongly engrained in the existing autism to make strong associations the 1980s, demonstrating effective context of his living environment. between things; people become associated strategies for people with challenging Moreover, what John really needed was a with specific places or activities; behaviours. Rather than seeing better life. To reduce his stress and conversations are scripted; objects stay in challenging behaviour as a trait specific to improve his quality of life he needed an certain locations etc. Identifying rules and the person, functional assessment, the individualised service that embraced an patterns allows you to predict what is cornerstone of PBS, addressed the autistic viewpoint particular to him. going to happen or how people might question ‘What is the person trying to The philosophy of inclusion and behave. Change or variation from these communicate?’ This approach recognised community participation are accepted rules or patterns can be stressful, and may that without understanding the function ambitions for individuals with result in high levels of anxiety. For or role that behaviours play in developmental disabilities. However, someone who finds the social world communicating the person’s needs, community settings are often the very puzzling, this need to organise, classify and supports are unlikely to be effective. A settings in which people with autism impose structure might be greater; possibly functional assessment analyses the find it difficult to cope. John’s advocates as a way of regaining some of the sense of complex interplay between behaviours, proposed that change was only possible control and predictability which is missing possible underlying medical and organic if he could live in his own home, in the from their interactions with others. factors, psychological and mental health community. But there were plenty of

frontline Spring 2012 29 AUTISM

excuses why it wouldn’t work: what enduring positive outcomes it is critical John moved to his community home would happen if he hurt a member of the the people who already live with and near his family after thirty years living in a public, what if staff couldn’t cope support the individual understand and large institution. He had strong advocates working alone, what if he became upset deliver these supports. Clinical who believed in his strengths and abilities in the car, what if. .. Some of the concerns behavioural interventions have a strong and were willing to see the world from his from family and staff were paternalistic, evidence base, but can be technically perspective. At first the move was not plain but others were real. The challenges and complex, sometimes counterintuitive and sailing; the changes to his routine were complex needs sometimes associated with often inaccessible to families and carers. difficult for John but his support staff were autism/DD can make the reality of In order to be effective therefore, clinical determined. Gradually intensive supports inclusion and community participation inputs are challenged with translating were phased out, behavioural incidents difficult to realise. Thankfully John’s these strategies so that they can be reduced and risks were no longer worried advocates were resolute—but making it delivered by an individual’s natural about. Life still throws him curve balls: work would involve some essential supports in ordinary community settings. staff changes when familiar staff are sick, ingredients: Training staff and families to bad weather means sometimes activities implement support plans has shown get cancelled, crowded, noisy places in the 1) A shared vision and an ongoing enduring behavioural improvements community still cause him stress. But now process of training and support (McClean et al. 2009). Ongoing John has more control over his life, he has A lack of understanding of autism can collaboration with all stakeholders to positive relationships with the people lead to a variety of problems, including review and revise strategies, with an around him, he chooses where he wants to the use of inappropriate supports. The emphasis on evidence based practice, can go and what he wants to do. He knows wrong supports may lead to ever help maintain supports and prevent who is supporting him each day, his house increasing levels of stress and can crises. is calm and quiet. And for all this, John ultimately end in crisis situations. Because also has more money, because living in his working with people with autism is so 3) Flexible funding and a range of own home costs less than living in a large different from working with others with a flexible supports and services institutional setting. FL disability, Autism Awareness training is Large institutional settings are associated Nessa Hughes, essential. This training should give carers with less choice, less community Muiríosa Foundation a better understanding of what the world participation, and a poorer quality of life. feels like from the perspective of autism. A new appreciation for individualised References In addition to generic training there funding within disability services will de- Baker, J. K., Fenning, R. M., Crnic, K. A., should be a focus on the idiosyncratic centralise services and enable the Baker, B. L. and Blacher, J. 2007 needs of the person in the context of development of tailored individualised Prediction of social skills in 6-year-old their autism. PBS is less about addressing supports. Single-occupancy homes have children with and without behaviours that challenge per se, and the advantage over group homes as the developmental delays: Contributions of more a process of building a vision for person can exert more control over their early regulation and maternal what a good life would be for the person. environment and exercise more choice. scaffolding, American Journal on Mental All of the key stakeholders in John’s life This option is essential for individuals Retardation 112 , 375-91. had a shared vision of what a good life for with autism who may experience high Davis, T.E., Moree, B.N., Dempsey, T., John might look like: what made life levels of stress when living with other Reuther, E.T., Fodstad, J.C., Jess, J.A., worth living, what kind of relationships people. Changing to more flexible staff Jenkins, W.S. and Matson, J.L. 2011 worked for John, what didn’t work for support arrangements on an as-needed The relationship between autism John. Another goal of PBS is improving basis opens up opportunities for more spectrum disorders and anxiety: The coping skills for the individual and the efficient and targeted services. moderating effect of communication, people who support them. People’s Research in Autism Spectrum Disorders 5 perceptions of the causes of challenging (1), 324-29. behaviours and the impact of using poor Hastings, R. P. and Brown, T. 2002 behaviour management skills are linked There may be many Behaviour problems of children with to burnout (Hastings and Brown 2002, autism: Parental self-efficacy, and Mitchell and Hastings 2002), while self- reasons why there is a mental health, American Journal on efficacy or the belief that we have the link between autism Mental Retardation 107 (3), 222-32. skills and abilities to manage is linked to McClean, B, Dench, C., Grey, I., Shanahan, better coping skills. On-going training and challenging S., Fitzsimons, E., Hendler, J. and and staff and family supports can have a behaviours. There is a Corrigan, M. 2005 Person focused positive impact on a carer’s perception of training: A model for delivering effectiveness and therefore self-efficacy. strong association of positive behavioural supports to people stress and anxiety with challenging behaviours, Journal of 2) A consultation model that views Intellectual Disability Research 49 , 5. families and staff as the agents of across all ages of Mitchell, G. and Hastings, R. P. 2001 change people with a Coping, burnout, and emotion in staff Challenging behaviours occur in real life working in community services for settings, and so interventions need to diagnosis of autism. people with challenging behaviours , focus on building supports in these American Journal on Mental Retardation natural settings. For effective and 106 , 448-59.

30 frontline Spring 2012 OUR JOURNEY

Maria Moran tells the story of her daughter Jessica’s diagnosis on the autism spectrum and the whole familys’ journey as they tried to find their way through a maze of treatments and opinions for the best method to help and care for her.

On 23 March 2003, Jessica began her Jessica made her first Holy Communion formal education. She joined a newly in May 2009; she was very happy and opened pre-school for children with content in herself. She even did a reading autism in St Helen’s National School in on her Communion day. We were n a Tuesday morning, 31 August Portmarnock, where she was happy and overjoyed. 1999, an incredible journey made great progress. We also availed of Jessica began early adolescence at ten Obegan for me, my husband and home tuition from a separate source for years of age in October 2009. Again she got family. Jessica Elizabeth was born in the twenty hours a week. We then went about upset and violent and the meltdowns began Rotunda Hospital, Dublin, overdue by a finding home tutors. once more. She began stripping and her couple of weeks. After an arduous and Along the way we met a lot of people toilet training regressed. She was put in a difficult birth, I held my precious bundle who were, in my opinion, incompetent. room on her own again, where she trashed in my arms. She was so beautiful—the Most of these ‘so-called’ tutors were not the classroom, and once during this time youngest of five daughters. I felt all my properly trained and were, I felt, only in it she tried to strip off on the school bus. On dreams and aspirations had come to for what money they could make out of it. one particular occasion in February 2010, fruition. I expressed my concerns to the she came home from school and trashed Jessica developed normally and Department of Education. The Department the house. She refused to go back to school reached all her developmental goals, until has reformed the criteria for home tutors. and spent the next eight months at home about thirteen months. She seemed to They must now be qualified teachers with and would not leave the house. have a clumsy walk and did not interact a school roll number and have appropriate The whole family was greatly affected well with others. We went to Temple experience with children with autism. by these developments. Stress and strain Street Hospital and had a series of tests Eventually, through trial and error, we took its toll on my health and I ended up in done, which showed up as inconclusive. came across some good tutors. One, in hospital three times. Jessica and I were In August 2002, still not happy with particular, stood out—a primary teacher housebound for months on end. Jessica’s development, I contacted the with experience in special educational In September 2010 Jessica joined what I Mater Hospital’s Child Guidance Clinic in needs. Jessica went from strength to can only describe as the ‘family of St Paul’s’, Ballymun, where in November 2002, we strength. in Beaumont, Dublin. Under the guidance finally got the devastating news that Jessica had been on a waiting list for and care of the staff there, Jessica has Jessica was on the autistic spectrum. We several years for an ABA school. When we bloomed into a very happy young lady. were not prepared for the diagnosis; we heard that she could finally start at this I ask myself what we have learnt from did not know which way to turn. The particular school, we were delighted. our experience. I have come to the psychiatrist who gave us the diagnosis Jessica spent several years there, sometimes conclusion that it was a mistake to buy into advised us not to buy into all the hype making progress and sometimes regressing the hype that there is a cure for autism. that surrounded cures for ‘autism’. again. Furthermore, we have learned to love, Unfortunately we did not take his advice, In 2008 Jessica got very upset and accept and cherish Jessica as she is, as we and went everywhere and to anyone to violent and would have a ‘meltdown’ for journey through life together as a family. FL find help in obtaining a cure. We looked no apparent reason. I spoke to the director into the Sunrise Programmeme, ABA of the school about this. In my opinion (Analytical Behavioural Analysis), special certain programmes were put into place diets, potions and oils. We bought into it that had a devastating effect on Jess. She all. was placed in a class with children who An advisor for the Sunrise Programme had violent behaviours and, in my view, told me that I was giving up on my inappropriate methods were used to daughter when I decided not to part with control Jessica’s outbursts. I asked that she the €20,000 needed to attend the be removed from the class and that the programme in America. When we heard methods would be discontinued. On the about ABA, we went to a lecture in NUI advice of a psychologist attached to Maynooth to learn more about it. I called another service, Jessica was placed in a the number we were given in the lecture room on her own and progressed again. and added Jessica’s name to a waiting list After a couple of months she rejoined her Jessica, aged 12 at an ABA school. classmates and did very well.

frontline Spring 2012 31 AUTISM/INTELLECTUAL DISABILITY AND PERSON-CENTRED BEHAVIOUR SUPPORTS

ost people enjoy being engaged in activities and People with an ID/ ASC have been prescribed medications having meaningful relationships. These basic human to help them overcome challenging behaviours, they may have Mrights are important; they make people feel more been restrained in the past or may have been excluded because independent and competent. It is good to feel the same as of perceived problem behaviours. Positive behaviour supports everyone else and be part of what is going on. Having more skills provide people with a means to change environments and and better relationships with people are valued by most of us. offers people skills to lead better lives. Person-centred positive behaviour supports plans analyse People with autism may: the factors that affect a particular behaviour. (Target behaviours * prefer solitary or lone activities for fourteen individuals are displayed in Table 1 below.) * have difficulty understanding feelings of others/ reciprocity * have differences in their expressive and receptive Table 1 communication styles * have difficulty processing auditory languages * have strong attachments to objects/ interests * be resistant to change * be hyper- or hypo- sensitive to internal and external stimuli * engage in self stimulating behaviours * sometimes be easily distracted * have generalisation issues (see CPI Autism Refresher course manual for more details).

Some people with autism may need extra support to develop their skills and build their relationships. They may want support The person-centred positive behaviour supports plans seek to help them overcome some of the recognised features of their to determine why and how a person uses their behaviour in condition. Supports may come from outside agencies to help order to exercise some control over their environment. these people along the way—with communication supports, Information is collected from interviews, observations and health care needs, respite or inclusive education. Local and assessment tools. The person completing the functional national organisations offering practical support, developing assessment may be a family member (n, 1) or a support staff (n, coping skills and understanding and emotional support are 13). highly prized by families. Some families may benefit from In the 14 case studies referred to in this article, the receiving information. following possible primary functions of the target behaviours History has taught communities to look to professionals to care for were identified (Tables 2 & 3): people with disabilities; twenty years of working for change has taught us that services by themselves can never be enough (Alan Tyne 1992). Table 2 The social model of disability stresses that the needs of individuals can never be considered in isolation from the social, family and political context in which they are embedded (Mittler and Mittler 1994). The emphasis for intervention has moved from focusing solely on the child with intellectual disabilities, to looking at the needs of the family as a whole. Being part of a family is important, working in partnership with agencies will help people set their own goals and reach their (Durand 1995) potentials. Over the last decade the former Sisters of Charity of Jesus Table 3 and Mary Services (now the Muiríosa Foundation) have been FUNCTION DESCRIPTION providing person-centred positive behaviour supports to people with intellectual disabilities. Some of the people have also been ESCAPE New or difficult or non preferred classified as being within the Autistic Spectrum Continuum. demands being presented to the Research shows that around one in four people with an individual intellectual disability would benefit from having a person- TANGIBLE May be deprived of tangibles, eg food, centred positive behaviour support plan. Positive behaviour music, toys; may be unable to express support is ‘… characterised by educational, proactive, and respectful they want something interventions that involve teaching alternative skills to problem behaviours and changing problematic environments. It blends best ATTENTION May be deprived of attention from practices in behavioural technology, educational methods, and others ecological systems change with person-centered values in order to SENSORY May be in a barren or restricted achieve outcomes that are meaningful to the individual and to his or environment her family’ (Bambara et al . 2004).

32 frontline Spring 2012 AUTISM

Table 4 REACTIVE PROACTIVE STRATEGIES STRATEGIES

ENVIRONMENTAL POSITIVE FOCUSED SITUATIONAL STRATEGIES PROGRAMMING SUPPORT MANAGEMENT

* Creating person centred * Predictable Day – visual * Reward schedules/ * Crisis Prevention visions planner extrinsic motivators Intervention * Increase family supports * Problem solving -Social * Antecedent Control * Active Listening * Low arousal environment skills * Stimulus Control * Redirection * Routine * Coping skills – trauma, * Psychiatry review of * Stimulus Change * Consistency waiting medications * PRN medication – * Visual schedule * Skills training - reciprocity * Speech and pain relief, anxiety * Fun/ Preferred Activities in relationships Language therapy * Interactional style * Relaxation training referral * Building Rapport * Regular breaks * Attention to lighting, sounds, * Self Management smells, crowds * Desensitization – noises, * Independent working groups * Finding a friend * Setting Limits – * Sensory based supports empowerment to have * Staff training in control to make choices understanding ASC and be aware of * Choice boards (First/ Then) consequences * To have more control over their daily life * Doing things they want * Having fun!

Other secondary functions were hypothesised for each supports have now enabled Roger to visit a shop in the local individual and these included environmental reasons, health village. Roger was supported with desensitisation and relaxation issues (anxiety, pain, skin disorders), attention or sensory techniques. He can buy himself a bar of chocolate and he has needs. There are many possibilities why a person is gotten to know the shopkeeper. He is supported by people who displaying a particular behaviour. A well-crafted person- have developed a bond with him and he continues to make more centred positive behaviour supports plan will identify the progress towards community inclusion each time he visits the main setting events or maintaining consequences, and shop. Quarterly reviews of Roger’s positive behaviour support intervene effectively. plan allow for his circle of support to meet and forge a joyous Once the functional assessment information is vision for his future. completed, an intervention plan is created from the inference made as to why the challenging behaviour occurs. To summarise: models of family support have changed over Interventions are broken down into a conceptual framework the last thirty years; the family and the professional have (LaVigna et al. 1995) so that challenging behaviours are different but equally vital roles to play in supporting reduced and the person has a much improved quality of life. individuals with an intellectual disability and autism. Some common interventions from the 14 case studies are Having autism does not mean that one cannot enjoy life detailed in Table 4, above. the same as everyone else. Person-centred positive Below are two examples of how person-centred positive behaviour supports help people to live the lives they want behaviour supports helped two individuals with autism. by helping them to build their own skills, so they are not marginalised by the behavioural characteristics of autism. Vignette 1 Person-centred positive behaviour supports result in a Seamus is a gentle young man. He delights in music, listening to it reduction in the use of prescribed medications, support and creating it. Seamus lives at home with his mother. Seamus’s people to forge optimal visions for the their future with mother was concerned because Seamus did not sleep well at night. circles of support, and see more collaborative work between She learned about Positive Behaviour Supports through the services people with ID and their families, circles of support and Seamus receives from the Sisters of Charity/Muiríosa. With agencies. Person-centred positive behaviour supports guidance and support, Seamus and his mother made empower individuals with ID and autism to have a voice environmental changes to his lifestyle at home. Seamus now sleeps and forum to express themselves. There are increases in better and takes less sedating medication. community presence and participation. They offer a committed focus on fixing environments and not people Vignette 2 (Horner 2000) and, as a result, the individual and their Roger currently lives in a congregate setting. He prefers quiet places family experience enhanced quality of life! FL and people.—he likes to get to know people bit by bit, and try out Eleanor Finnegan and Kathy O’Grady new activities gradually. Roger used to appear anxious if he had to Muiríosa Foundation go outside; he didn’t want to get into a car. Positive behaviour Longford/Westmeath

frontline Spring 2012 33 Occupational Therapists work with individuals and groups in order to promote health through engagement in occupation (AOTA 2008). In this article, Margot Barry aims to highlight how the diagnosis Autistic Spectrum Disorder (ASD) can impact a child’s ability to develop and participate in activities of daily living and how occupational therapists assess and intervene with a child who has an ASD. It also gives some information on the services ‘Sensational Kids’ provides to children with ASD. AUTISM: An Occupational Therapist’s experience and perspective

hildren in general learn through These foundational skills include, but not inherently associated with the a variety of processes. They learn are not restricted to, motor skills, visual diagnosis and social skills and sensory Cfrom observing others perceptual skills, sensory processing processing skills are more likely to be participate in activities of daily living skills, work task planning skills, the cause of their avoidance or inability and they also learn through trial and problem solving skills, social skills, play to participate in sport. All the games error processes. Trial and error learning skills, independent work task and activities mentioned above have a relies on the child’s ability to try the performance and visual motor large social skill component that same task in a variety of different ways. integration skills. If a child has requires a child to understand written Children with an ASD often have difficulties with a particular and unwritten rules about games and limited interest in observing others, foundational skill, all the activities of conduct during these activities. A child with the result that learning through daily living within which this has to use personal space appropriately the process of observation (a social foundational skill is required will be during contact sport and also possess process) is diminished. Similarly, the affected negatively. the ability to read situations flexibly in routines and stereotypical movement Children with an ASD often require order to be able to respond patterns associated with ASD can occupational therapy intervention to appropriately. This is a very large prevent a child from learning through a assist them in acquiring proficiency and challenge for the child with ASD. Social trial and error process. From my independence in activities of daily skills difficulties are an inherent feature experience, the level of flexibility living, such as personal care activities, of the ASD diagnosis (APA 1994) and required for trial and error can be very hairbrushing, toothbrushing, dressing, they make it difficult for a child with difficult to achieve in the presence of eating with utensils, school related the diagnosis to participate in team the fixation on a routine. For a child skills, handwriting and cooperation in sport and social physical activity. with an ASD, natural development may games and sport. Participation The social skills element involved in not be an automatic process; assistance restrictions in these activities can arise ball games and physical education is is required. As a result parents, teachers from having delays or disordered not the only difficulty commonly or professionals may refer a child to an foundational skills. An example of this associated with an ASD that hinders occupational therapist. The is a child who is referred with participation; sensory processing ability occupational therapist’s main aim is to difficulties and avoidance of is another. During participation, a child identify and work on the elements that participation in ball games, running has to contend with noise, visual hinder a child’s ability to develop and games, physical education classes and stimuli, touch and movement. None of to participate in appropriate activities of team sport. In a child who does not these elements are predictable during daily living at home, at school and at have an ASD, the first foundational skill games and sport. Many children with play to the best of the child’s ability. difficulty that is suspected is a gross ASD experience sensory processing Independence in activities of daily motor skills delay or movement difficulties (Claveirole and Gaughan living develops as the child’s ability in difficulty. However in the case of child 2011; Kashman and Mora 2002). As a various foundational skills develops. with an ASD, movement difficulties are result they may tend to avoid

34 frontline Spring 2012 AUTISM

participation in ball games and running elements of function. This is games. This isolates boys, in particular, particularly important when the child ABOUT SENSATIONAL KIDS in the school yard, where soccer, transitions from one environment to Sensational Kids is a registered running and tumbling are the preferred another. charity set up by parents to provide ways of interaction between peers. At times of transition, when the accessible, affordable and high- Occupational therapy plays a big role in social environment changes for the quality clinical services, summer facilitating the development of social child with an ASD, difficulties with camps and groups for children of all skills through groups, where previously mastered skills may arise. At abilities, including children with participation in group activities, games, these times, intervention is necessary to special needs. These services include turn-taking, joint participation and play revisit and re-learn skills that may have occupational therapy intervention for activities is practised in a safe been mastered in a previous context, children with an ASD. Sensational environment, thereby allowing but not implemented in the new Kids runs a child development and friendships to be formed and social environment. Occupational therapy is learning store which stocks a range skills to be learnt. especially meaningful at these times of of skill building and therapy Learning skills in a therapy group is transition, e.g. from secondary school to products. Sensational Kids is also important, but it is even more university. important that the skills are transferred Transitions do not need to be as committed to providing high-class into the everyday context of a home, significant as a change from school to training services for those who work neighbourhood or school. This may not university. A transition that could cause with children with special needs. happen automatically for a child with difficulties could be as small as having an ASD; it needs to be facilitated by to come back into class after break. remains low and their need for integrating the new tasks into the Many social skills and sensory skills are sameness remains high. Where a child child’s routine. A child with an ASD necessary during times when there are has a general learning disability and may have an urge to adhere to a specific changes in location and pace during the also an ASD, the two diagnoses make it routine. Routine can be used as a day and it is often at these times that a difficult for the child to acquire skills positive force to facilitate participation child with ASD needs assistance. It is (Claverole and Gaughan 2011). in newly learnt activities. Teamwork essential that they are prepared for the Occupational therapists take this into between the therapist, the parents and transition and that the next task or account in setting realistic goals the teachers is essential in achieving chapter is evident to them. Transitions, together with teachers, parents and success in the transfer of skills from one no matter how small, need to be carers. In cases where it is clear that a context to another. The context of an supported and this is best done through child will never become an activity plays a very important role in the creation of a predictable routine. independent adult and will require achieving activity participation in the The occupational therapy intervention support and supervision to be able to child with ASD. may focus on assisting a teacher and carry out a basic daily routine, it is A child with an ASD might display parent to create such predictability. essential that therapy is not the ability to perform activities of daily The above information may give the unrealistically aimed at the norm of living in one environment (e.g. home), impression that all skills which are functioning for the child’s age group. It but not display the same level of skills addressed in occupational therapy are should be targeted at the level the in another (e.g. school). In this case the learnt. The reality is, however, that individual’s capability. Teamwork occupational therapy intervention some children never progress from between the therapy team, parents and should focus on environmental routines which require a lot of adult teachers is essential in achieving the strategies, rather than the child’s assistance and may remain at a basic best outcome for the child. inherent ability. An assessment is developmental level. Their ability to Occupational therapy provides one carried out to investigate contextual adapt to environmental changes piece of the puzzle in a team approach to creating the best potential outcome for a child or adult with an ASD and a general learning disability and their family. FL

Margot Barry is an Occupational Therapist who has worked with children with special needs in a variety of settings and countries since her qualification in 1996. She reached the level of clinical specialist and worked in an autism specific multi- disciplinary team of professionals for several years. Latterly, she worked as a lecturer in the University of Limerick, completed an MSc by Research and Thesis and also worked at Sensational Kids Ltd as the clinical manager. Margot is committed to working alongside parents and teachers to facilitate best outcomes.

frontline Spring 2012 35 ST CATHERINE'S ASSOCIATION SERVICES FOR CHILDREN WITH AN ASD DIAGNOSIS

St Catherine’s Association was formed in Co. Wicklow in 1970 by parents of children with intellectual disability in response to underdeveloped services for such children in the county at that time. From very humble beginnings involving simply providing a drop-in service so that parents could do many of the tasks of day-to-day living, it has grown to providing services for 250 children up to the age of eighteen and their families. Ian Grey , principal psychologist of St Catherine’s Services, details the results of a recent survey on the service today.

Introduction is Early Intensive Behavioural they must refer children showing Owing to its origins based on parental Intervention, which to-date remains the developmental delay to the HSE Early needs for their children, St Catherine’s model of early intervention associated Intervention Team and parents then enter Association continues to keep identified with the best evidence-based outcomes for a second system. Owing to the very heavy parental need as one of its core guiding young children with autism. The pre- caseload of this team, its wide remit and influences on service development. In school and school classes associated with staffing issues related to the current recent years, perhaps in part because of the Centre were the subject of a whole- embargo on recruitment/replacement of better diagnostic practices, the identified school report by the Department of staff, this inevitably slows down effective rate of autism has increased substantially Education and Science in 2010, which identification of children who potentially within Wicklow—as it has in many other provided a highly positive review of the have autism. In those cases where children parts of the Republic. In turn, this required school and the quality of teaching and do score positive on certain screening St Catherine’s to develop services for learning. The report also stated that the instruments, they are then referred to St children with autism in line with expressed evidence of breadth and flexibility in the Catherine’s for full assessment by the parental need and evidence-based practices. use of ABA within the school was diagnostic team. Unfortunately delays of Traditionally, St Catherine’s was charged commendable. up to six months or longer can take place with providing services to children up to in some instances. There are close links the age of eighteen with moderate (or Challenges for parents between the HSE Early Intervention team lower) intellectual disability. The service There appears to be at least three separate for Wicklow and St Catherine’s (the team has expanded in recent years to include challenges that parents currently now being the main referral source to St approximately 100 children with a experience if they have a child with Catherine’s for children suspected of diagnosis of autism or autistic spectrum autism in County Wicklow: referral and having an Autistic Spectrum Disorder). In disorder, with the majority having a co- timely access to appropriate diagnosis and addition, St Catherine’s and the team work morbid intellectual disability. intervention, support for children in closely together to speed up referrals as mainstream schools, and lack of structures much as possible. Services to enable entry into mainstream schools. The second challenge for parents, and At the Centre for Early Intervention in St As in many other parts of the healthcare one that may be replicated in other parts of Catherine’s Association, a highly skilled system in Ireland, the difficulty for parents the country, is the absence of a system that diagnostic team is available which provides appears to be one of getting ‘into the allows children with autism to move from interdisciplinary assessment involving system’ in terms of accessing appropriate a high-support intensity environment to a clinical psychology, speech and language diagnostic and intervention services for low-support environment. The goal of therapy and occupational therapy. The their child. Over the years at the Centre Early Intensive Behavioural Intervention, team uses an assessment framework in line for Early Intervention, parents have supplemented by multi-disciplinary with best practice guidelines and uses gold anecdotally reported experiencing support in the Centre for Early standard assessment methodology such as substantial delays in accessing appropriate Intervention, is for children to acquire the the Autism Diagnostic Observation services, with concomitant effects on stress personal and academic skills needed to Schedule (ADOS). A single diagnostic report affecting both themselves and their function and continue to learn in a less is prepared with agreed priorities for families. Although St Catherine’s structured environment. In other words the intervention for parents. Parents whose Association has always accepted and simple goal is get children ‘back on track’ children receive a diagnosis of autism (or continues to accept parental referrals, so they can attend mainstream schools. who are strongly suspected of being recent changes to referral processes in the However, a difficulty that has arisen is the affected by autism through external reports county are not likely to improve the relative absence of feeder schools in or the use of reliable screeners until situation for parents. Wicklow for children with autism. The thorough assessment is completed) are Recent HSE changes have resulted in majority of mainstream national schools eligible for accessing intervention services. parents having to deal with at least two have a cap of two classes with special The Centre for Early Intervention has systems prior to securing a place in St designation for children with autism and sanction for pre-school and school-age Catherine’s. Parents will almost always these typically fill quickly. Such classes may classes and these are currently based in a initially raise their concerns over a child be appropriate for children following EIBI number of locations throughout Wicklow, with their primary care teams, GPs or and would allow opportunities for social including Bray and Arklow, to enable ease public health nurses. In the past such inclusion through less structured of access for children and their parents. The professionals could refer children directly interventions. However, with these classes core model of intervention in these classes to St Catherine’s Association, but now capped and almost always full, the

36 frontline Spring 2012 AUTISM

opportunities for children to move on are satisfaction given by parents being the longterm view and the high numbers seriously impaired. relationship between parents and staff, requiring help with this suggests that we The third challenge for parents is for and the assistance/care given to children, have to begin informing parents from the those children who ‘fall between the followed by the model of care/assistance outset of the options they may have in cracks’. Services for children with autism in the Centre for Early Intervention. the future. This, however, is crucially in Wicklow suffer from many of the dependent on how their child responds to structural problems evident in other areas. TABLE 1 : Parental Satisfaction with early intervention, so it is not always All services have selection criteria and Early Intervention possible to be as predictive as parents children with autism who fail to meet the EPSSEI Scales Max. Mean might wish. Nonetheless, even this should criteria for any service may end up with Score Score be communicated and as much none. By way of illustration, children with Assistance to parents 75 56 information as possible given. moderate intellectual disability and autism Assistance to children 60 52 in special units attached to mainstream Social Relationships 15 13 Conclusion schools are automatically not covered by Model of Care/Assistance 75 64 St Catherine’s Association continues to Parents’ Rights 15 12 some services, owing to the co-morbid strive to provide high quality assessment Other Agencies 15 10 moderate level of intellectual disability. and intervention practices for the children Relationship with Staff 30 27 The National Educational Psychology of County Wicklow. Parents do experience Service (NEPS), which is charged with delays in accessing the service, in part due meeting the needs of these units, is Parents’ needs were assessed across six to structural issues within the county, and frequently unable to do so owing to domains: Needs for Information, Needs it is hoped that these can be resolved structural problems in the system. for Support, Explaining to Others, because it places parents under Although St Catherine’s provides services Community Services, Financial Needs unnecessary strain. In respect of future to children with moderate intellectual and Family Functioning. Needs for service development, the next challenge is disability, it traditionally has only done so Information and Needs for Support were to take account what parents themselves with respect to those children who attend the broad areas where parents expressed need from the Centre for Early schools or classes belonging to St the greatest need (see Table 2). Intervention and incorporate them into Catherine’s Association. There are a Percentages given relate to the number of the service in the best way to meet their growing number of children who are in parents who reported definitely needing needs. Despite these needs, the survey this category and in response St help in relation to the content of that results did reveal high levels of satisfaction Catherine’s Association and the HSE Early individual item. with the service, particularly in the Intervention Team hope to establish an These results shine a light on the domains of relationships with staff, the Outreach Team with joint staffing to meet needs of parents attending the Centre for assistance and care provided to children the needs of these children. Early Intervention. Information clearly and, perhaps most importantly, with the constitutes the greatest need, particularly model of intervention/care itself. With Parental needs and satisfaction with around services that might be available in these three key critical factors in place, the early intervention the future. As service providers, we may foundation exists to meet the needs of the Critical to service development for often forget that parents always have a children and their families. FL children with a diagnosis of an autism spectrum disorder is determining parents’ views on services they currently receive TABLE 2 : Parents’ Needs around Early Intervention and also what they identify their needs to Needs for Information % be. As mentioned earlier, St Catherine’s I need more information about my child’s condition or disability 36% Association has always striven to be I need more information about how to handle my child’s behaviour 47% responsive to parental needs and it has I need more information about how to teach my child 63% I need more information about the services that my child might receive in the future 80% recently undertaken a parental survey to I need more information about how children with disabilities grow and develop 73% determine the degree of parental satisfaction with its Centre for Early Needs for Support Intervention, and also to determine I need more opportunities to meet and talk with parents of children with autism 48% current parental needs in respect of the I need to have more time just to talk with my child’s teacher or therapist 35% service. Using the European Parent I need reading material about other people who have a child similar to mine 38% Satisfaction Scale about Early Intervention, I need to have time for myself 51% a total of 49 parents rated six dimensions Explaining to Others of the service: Assistance/Care for Parents, I need more help in how to explain my child’s condition to his/her siblings 22% Assistance/Care for Children, Social Environment, Relationship between Community Services Parents and Service I need help locating a doctor who understands me and my child’s needs 22% Providers/Professionals, Model of I need help locating baby-sitters who are willing and able to care for my child 20% Care/Assistance, and Parents’ Rights. Examples of items from these scales and Financial Needs parental scores are given in Table 1. The I need more help in paying for expenses such as food, housing, medical care, clothing 28% results suggest that overall parents report Family Functioning high levels of satisfaction across these Our family needs help in discussing problems and reaching solutions 24% dimensions, with the highest levels of

frontline Spring 2012 37 Joe Wolfe and Trevor Nesirky introduce the second in a series of articles designed to support service providers in preparing for registration and inspection by the Health Information and Quality Authority. It draws on the lessons learned from published reports of HIQA inspections of Older Persons Services and from their experience in working with service providers in that area who have undergone the registration and inspection process. The article provides practical advice rather than academic comment. Later articles in the series will focus on conducting self-assessments and audits, building evidence for inspections and preparing for follow-up visits. PREPARING FOR REGISTRATION AND INSPECTION OF RESIDENTIAL SERVICES FOR PEOPLE WITH DISABILITIES

Introduction/background The Health Information and Quality Authority (HIQA) is the Table 1: Examples from HIQA inspection reports, as statutory authority with responsibility for setting standards for relevant to staff health and social care services and for ensuring that such Examples of good practice, as taken from HIQA reports: standards are met. HIQA is responsible for the registration and — “Inspectors saw staff interacting positively with residents. The inspection of residential services for people with disabilities manner in which staff addressed residents was respectful, they under the Health Act (2007). The Authority published National stopped to talk and give residents their time, maintaining eye contact and chatting to them” Quality Standards: Residential Services for People with Disabilities in 2009. There are regulations being developed at — “All staff interviewed displayed good knowledge of the centre’s policy and procedures..communication links throughout the centre present to give statutory strength to the standards and which were good” organisations will be measured against as part of the registration — “Staff training records viewed showed training in areas identified and inspection process. These regulations will also provide as being mandatory requirements or meeting residents’specific further detail to organisations on what is expected of them. needs was delivered to staff” — “The meal was unrushed and was a social occasion for all” Preparing staff for registration and inspection — “Staff demonstrated a clear understanding of their roles and The registration and regulation system will not involve only responsibilities” senior managers; staff at all levels and carrying out all types of Examples of poor practice, as taken from HIQA reports: roles will be part of the process. It is vital that adequate time and — “Policies and procedures were inadequate....there was no evidence resources are deployed in advance to ensure that all staff are that they had been implemented. Staff spoken to were unaware of prepared for inspections. their contents.” Table 1 provides some direct quotes from inspection reports — “Inspectors observed staff address female residents using from older persons’ services, in relation to issues relevant to staff. terminology such as good girl. This form of address did not These are useful as they indicate good practice and poor practice preserve the dignity of the residents” identified by inspectors in various reports of inspections. — “Food was poorly presented, all ingredients were blended together” As can be seen from the table, inspectors utilise three different approaches to gathering evidence and forming — “The nursing documentation and language used therein did not provide evidence of person-centred or dignified care for such judgments during inspections. This approach to inspection is set residents” out in the HIQA National Quality Standards: Residential Services — “The activities nurse and occupational therapist develop goals for for People with Disabilities, as illustrated by the following: the residents but these are not available to other staff and are not ‘An inspection typically consists of three elements: analysis of incorporated into residents’ daily routine” records and documentation; interviews with individuals, families, professionals involved with the service and those who their understanding of the standards and the regulations, provide and work in the service; and observation of practice.’ their knowledge of residents’ assessed needs and individual Based on the above and based on our experience of working with care and person-centred plans, and their understanding of services who have undergone inspections, inspectors appear to key safety issues in the service. spend considerable time during inspections: G Observing staff practice and the type and quality of service How best to prepare staff for the inspection and that they provide. This includes observing the interactions of registration process staff with residents and with other staff; the manner in In our experience, it is insufficient just to provide staff with which staff engage with residents; the quality of staff practice copies of the standards and expect them to fully understand and in core areas such as medication management, reporting and implement the standards based on reading them. Organisations recording and care practice; the quality of staff supervision; need to focus their quality processes heavily on educating staff and the maintenance of dignity and respect. on the standards and regulations and building a culture of G Auditing documentation and records including, but not quality improvement within staff teams. restricted to, resident’s files, personal profiles, individual In order to prepare staff for the level of scrutiny that clearly plans, communication records, food menus, medication occurs in HIQA inspections, it is vital that managers provide administration records, staff meetings, records of staff support and guidance to their staff. Staff need to be clear on how supervision, records of complaints and the complaints log, the system for regulation and registration works and what their and residents’ financial records. exact roles are. It is important that all staff know how evidence is G Interviewing staff with regard to their knowledge of collected and how they may be involved in the inspection and residents, their knowledge of core policies and procedures, information gathering process. Inspectors will gather

38 frontline Spring 2012 STANDARDS

information from a number of different sources and staff need to G Is there evidence that staff have read and understood any be aware of their responsibilities in each area. Staff must also be relevant policy documents? aware of the different types of inspections (announced and G Are staff aware of any individualised requirements such as unannounced, registration and non-registration-related) and the the administration of PRN medication? requirements on them for the different types of inspections. Some G Can staff demonstrate competence in medication questions that managers and providers should ask themselves in management? relation to inspections are: G Have audits been conducted with regard to medication management and have corrective actions been Table 2: Key questions for managers and providers in implemented? preparing staff G Is there evidence in the records of staff competence in — Are staff aware of the standards they should work to and on the recording medication management issues? regulations (to be published by HIQA)? — Are staff comfortable with being observed? Key Area 4: Health and Safety — Are staff aware of the documentation they must complete in general G Are staff aware of and clear on any procedures that are in and the standards required with regard to documentation? place for the management of major risks such as missing — Are staff aware of the contents of the key documents? persons? — Are staff aware of the areas they may be questioned about? G Are staff aware of their responsibilities in relation to: — Are staff used to being interviewed about their work and the personal safety, fire safety, lifting, moving and food hygiene? standard they provide? G Can staff demonstrate an understanding of any risk assessments that are relevant to their work? In addition to the above, we believe that managers and providers G Is there clear evidence of staff training in relation to key need to focus on five key areas at the start : health and safety issues relevant to their work and is there a plan in place to address any essential unmet training needs? Key Area 1: Protection G Can staff demonstrate competence in safe working practices? G Can staff demonstrate an understanding of the systems in place G Do staff know how to and where to report and record any to maintain safety? safety concerns? G Is there evidence that staff have read and understood the relevant documentation? Key area 5: Care Practice G Can staff identify the signs and symptoms of abuse? G Are staff competent and confident to carry out care G Can staff describe the nature of abuse in settings for people practices? with disability? G Is there evidence of staff receiving training in key areas of G Are staff aware of the particular vulnerability of people with care needs of the residents they are supporting? disabilities to being abused? G Can staff demonstrate an understanding of their role in G Do staff know who to report concerns to? relation to the delivery of intimate and personal care? G Is there clear evidence of staff training in relation to protection G Is privacy provided when assistance is being given in work and is there a plan in place to address any essential relation to individual care (such as bathing, washing or unmet training needs? going to the toilet)? G Are staff clear on how to complete the relevant documentation G Are service users treated with respect by staff when and are they aware of inappropriate and appropriate individual care is being provided? terminology? G Are mealtimes a time to relax and socialise? G Are staff trained in understanding and responding positively to G Are staff clear where they can access additional support and problematic behaviour? advice? G Can staff demonstrate that they understand behaviour which G Can staff demonstrate an understanding of the may indicate that a service user has a concern or complaint individualised care needs of those service users they are which cannot be communicated in other ways? supporting and does this understanding match what is recorded in the person’s file/plan? Key Area 2: Fire G Can staff demonstrate an understanding of the core elements Conclusion of the policies and procedures relating to fire safety, including Clearly, the preparation of staff for inspection and registration the location of fire exits, fire alarm, fire equipment and of services is fundamental. There are valuable lessons to be assembly points and the procedure to follow in the event of a learned from the inspections of services for older persons and, fire? in particular, on how inspectors appear to have conducted G Is there clear evidence of staff training in relation to fire safety inspections. We hope that the views we have expressed from and is there a plan in place to address any unmet training needs? our experience in working with older persons’ services and G Can staff answer questions relating to their role with regard to from our analysis of the reports of inspections in this area are fire safety? useful in supporting services for people with disabilities. G Is there evidence that all staff have been involved in fire drills? While our focus here has been on key areas of safety and wellbeing, the principles and processes set out can equally be Key Area 3: Medication applied to the other standards and regulation that will be G Can staff demonstrate an understanding of their role in inspected. Every opportunity should be taken to build staff relation to medication management? competence and confidence; staff supervision and appraisal, G Is there evidence that staff have been given the relevant team meetings and self-assessment and audit processes are medication management training? ideal for doing this. FL

frontline Spring 2012 39 Subscribe to F RONTLINE

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