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STANDARDS — EUCHARISTIC CONGRESS — HIQA— SURVIVAL

DiagnosticClassification

AUTISMIN IRELAND

Volume 86 • Spring 2012

F R O N T L I N ETHE I R I SH VO ICE FOR INTELLECTUAL D I SAB I L I TY

Parenting achild with ASD

EarlyIntervention

frontline Spring 2012

Volume 86 • Spring 2012

CONTENTS

04

10 A Labyrinth?Joe McDonald attempts to answersome of the queries posed byparents who have a child withautism.

12 Applied Behaviour Analysis(ABA) and AutismNiall Conlon explores ABA andautism studies in Irish universities.

15 The future of diagnosticclassification in autismProf. Michael Fitzgerald commentson the proposed new criteria forDSM V for autism and offers hisconsidered opinion of its impact onboth parents and children.

16 Autism and diagnosticcontroversiesRuth Connolly explores the problemof diagnostics over the widespectrum of autism, sometimesleading to misinformation,misunderstanding and confusion.

18 Caring for people with autismand intellectual disabilityCiaran Leonard explains why caringfor someone with autism is amarathon, not a sprint.

20 Developing relationshipsthrough play: The Early StartDenver Model for YoungChildren with Autism (ESDM)Mitchell Fleming looks at one modelof play-based intervention for youngchildren with autism.

23 Parenting a teenager withautism—what Stephen isteaching me!Avril Webster describes how she islearning to cope with the challengesof puberty in tandem with her sonStephen.

24 Here we go againRita Honan urges us to learn fromthe previous recession to minimisethe inevitable damage that will bedone by the restrictions being placedon necessary resources.

26 Getting startedMirena Vladimirova tells how a filmshe saw as a teenager hasinfluenced and helped her as shefought for services for her autisticson in her hometown of Sofia,Bulgaria.

REGULARS

03 Editorial

04 News UpdateCork man’s art chosen for UnitedNations stamp.NDA Disability shows morenegative attitudes.All-party agreement on disabilitymotion on Seanad Éireann.Brothers of Charity ordered topay €2 million in staffincrements.Inclusion Ireland AGM andannual conference 2012.Disability campaigner appointedto Council of State.Marino School, Bray embracesthe Community Special SchoolModule.Oireachtas Justice Committeehears presentations on moderncapacity law.Additional funding for childrenwith autism.Fighting to survive.The International EucharisticCongress 2012.

08 Letter to the Editor

38 Standards: Preparing forregistration and inspectionof residential services forpeople with disabilitiesJoe Wolfe and Trevor Nesirkyintroduce thesecond in aseries of articlesdesigned tosupport serviceproviders inpreparing forregistrationandinspection bythe HealthInformationand QualityAuthority.

28 Supporting communityliving for adults withAutism Spectrum Disorders(ASD) and DevelopmentalDisabilities (DD)Nessa Hughes takes a look atservices available for adultsdiagnosied with ASD.

31 Our JourneyMaria Moran tells the story of herdaughter Jessica’s diagnosis onthe autism spectrum and thewhole familys’ journey as theytried to find their way through amaze of treatments and opinionsfor the best method to help andcare for her.

32 Autism/Intellectualdisability and person-centred behaviour supportsEleanor Finnegan and KathyO’Grady describe the person-centred positive behavioursupports provided by the MuiríosaFoundation to people withintellectual disabilities.

34 Autism: An OccupationalTherapist’s experience andperspectiveMargot Barry aims to highlighthow the diagnosis AutisticSpectrum Disorder (ASD) canimpact a child’s ability to developand participate in activities ofdaily living and how occupationaltherapists assess and intervenewith a child who has an ASD.

36 St Catherine's AssociationServices for Children withan ASD DiagnosisIan Grey, principal psychologist ofSt Catherine’s Services, details theresults of a recent survey on theservices provided by StCatherine’s Association inWicklow.

F R O N T L I N E

31

23

FEATURE: AUTISM IN IRELAND

3

EditorStephen Kealy

Editorial BoardOwen DoodyMitchel FlemingColin GriffithsSiobhán KaneMichael McKeonKathy O’GradyMary de PaorNiamh PowerJean SpainMichael TeehanAngelina Veiga

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LEARNING FROM SPRING

Spring, a time for new life, ever present in ourimmediate environment, an opportunity toexperience the maturing of seeds sown, to observenew growth and change, to reap the rewards of

careful husbandry—ever mindful of the dangers of an unexpected frost.What a season to enjoy.

Good growth depends on our preparatory spade work—continuallywrestling with the weeds that can choke the survival of fragile plantendeavouring to retain their hold on life. The thoughtful gardener planshis/her work, making sure that rotation takes place as needed, that plantsstruggling in poor ground are given an opportunity to try new soil, morelight, less wind and positioning them in a way that allows themopportunities to showcase their colour and fruit.

This issue of Frontline looks at autism in Ireland—what opportunitiesexist for many with an ASD profile. Anecdotally, from the reports ofclinicians working in early intervention around the country, the number ofindividuals presenting with a diagnosis of ASD appear to be high. Many ofthose diagnosed have been identified through the assessment of need, orthrough early intervention services, or perhaps through both processes.Strictly speaking, the assessment of need is not a diagnostic process, but ifa need is apparent then clearly it has to be stated against the child’spresentation.

A recent article in The Examiner has rightly attracted extensive negativefeedback for the author, as the underlying theme ignores the hugeunderstanding from research and practice about Autistic SpectrumDisorders. Many people with ASD have now opportunities to live a betterquality of life because of that research, and our growing understanding ofautism, particularly the need to have an individualised approach thatfosters relationship.

From the various articles published in this issue, it is evident that betteroutcomes are possible when an individualised approach is implementedfor those presenting with ASD. This understanding is also equally true forany child with a disability who comes into an early intervention service.Again anecdotally, clinicians working on early intervention services havesignalled how meeting the legislative imperative of the Disability Act canhave a negative cascade effect on addressing actual interventions, whichare the essential, nurturing spadework of an individualised approach.

A fundamental goal of early intervention is to provide opportunities toameliorate a child’s disability and to parents to further develop theircompetencies. If a disproportionate amount of allocated resources are tiedup in meeting a legislative imperative, without available correspondingresources to address those identified needs, it is then reasonable toquestion the value of allocating huge clinical resources to a process whichre-states to parents what they possibly already know about their son ordaughter.

Is it time to think again about how meaningful individualised servicescan best be delivered to children at a young age, so that a difference canbe made to their lives with lasting positive effects?

Stephen Kealy

Contributors to this issue:

Margot BarryNiall ConlonRuth ConnollyEleanor FinneganMichael FitzgeraldMitchell Fleming

CRED I T S


F R O M T H E E D I T O R

Ian GreyPaul HenryRita HonanNessa HughesCiaran LeonardJoe McDonald

Maria MoranKathy O’GradyMirena VladimirovaAvril Webster

Dr James Reilly TD

Cover: Natalie Byrne fromSunbeam House Servicesscales new heights at theClimbing Wall in LilliputAdventure Centre,Mullingar (photo: MichaelTeehan).

4 frontline Spring 2012

N E W S U P D AT E

A painting by 25 year-old Colm Isherwood from Cork hasbeen chosen by the United Nations Postal Administrationto be depicted one of a series of stamps to mark WorldAutism Awareness Day (2 April 2012).

The Cork man’s painting was one of just eight piecesselected following a worldwide search for talented artistswith autism.

“It was an extremely difficult and challenging process tochoose just eight designs from all the artwork submitted,”said Rorie Katz, the creative director at the United NationsPostal Administration said. All of us were personallytouched by the stories of the artists and their families whoare extremely passionate and supportive about raisingawareness for autism.”

Colm and his twin brother Eric have severe autismwhich means they have few ways to communicate with thepeople around them. The 25-year-olds cannot talk, read orwrite but they understand others.

Since taking up painting about two years ago, art hasgiven Colm a new outlet. Currently, Colm is working hardon producing more paintings for a planned exhibitionwhich will hopefully coincide with the launch of the UNstamp collection in April. In 2010, Colm sold 10 out of 12paintings he exhibited at a show in the Cork Institute ofTechnology. That was his first ever exhibition.

When the UN started to look for applications inSeptember, the Isherwoods jumped at the chance to showoff their son’s talent again and submitted a number ofpaintings.

“What is remarkable,” said Eric, “Is that his was theonly one chosen from outside the United States andCanada.”

Colm has been working with his teacher Aine Crawleyon his painting and she has been a huge influence on hislife and work. Depending on his mood, their sessions canlast anywhere between 15 minutes and three hours.

Above: Eric and Veronica Isherwood, Mahon, Co. Cork, withtheir two sons Eric Jnr (left) and Colm (right) (Provision).

His work features a varietyof materials, as well as a mixof techniques to createtexture. The UN describes hispaintings as sensory andtactile.

As for Colm’s brotherEric, music takes priorityover art.

“He is too laid back forpainting,” jokes Eric senior.“We try to get himmotivated but he is moreinto music. He collects CDsfrom the local store and that’shis thing.”

The UN project was designed to showcase the artwork ofpeople with autism to educate others of their passion,creativity and talent. The stamps will be available from 2 April(World Autism Day) and can be bought online fromunstamps.un.org/.

(with thanks to Journal.ie)

What about me: Therapeutic Applications to Disability

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 seeking to provide innovative therapeutic supports for people with disabilities.

Further programme and registration details coming soon. Queries can be received at [email protected]

June 22nd, 2012Dublin Writers Museum

P

CORK MAN’S ART CHOSENFOR UNITED NATIONS STAMP

5frontline Spring 2012

N E W S U P D AT E

The results of the NationalDisability Authority’s 2012Attitudes Survey has shown thatpeople with a disability feel moresocially isolated and that publicattitudes towards people with anintellectual disability have grownmore negative. People weresurveyed on a number of differentissues. One-in-five people surveyedsaid they would object if children

with intellectual disabilities or autism were in the sameclass as their child, and nearly half (49%) believe thatpeople with an intellectual disability do not have thesame right to sexual relationships as everyone else. Thesurvey also showed that people with a disability are twiceas likely to feel socially isolated (18% of respondents witha disability, versus 9% without a disability) and also feelthey are restricted in participating in their community—34% of people with a disability surveyed said they havebeen restricted in socialising as a result of their disability;22% said they feel their opportunity for ‘living withdignity’ is restricted. Inclusion Ireland says the surveyshould be a wake-up call to government that action isneeded to stop people with a disability from slippingfurther away from mainstream society. Further details ofthe survey are available at www.nda.ie.

NDA DISABALITY SHOWSMORE NEGATIVE ATTITUDES

the Open training College, established in

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ALL-PARTY AGREEMENT ON DISABILITYMOTION IN SEANAD ÉIREANNThere was cross-party support in the Seanad for a privatemember’s motion on disability that was heard in January. Themotion, which was put forward by a group of independentsenators, led by Senators Mary Ann O’Brien and Marie LouiseO’Donnell, called for inspection of disability services, modernlaw to replace the 1871 Lunacy Act, and the creation of awelfare system that recognises the individual needs of peoplewith disabilities. While both the government parties and SinnFéin had put forward amendments to the motion, these werewithdrawn towards the end of the debate, allowing for cross-party agreement on the motion. Inclusion Ireland briefedsenators in advance of the debate on the motion. The text of thedebate can be viewed on www.oireachtas.ie (25 January 2012).

The Labour Relations Commission has ruled that the Brothers ofCharity in Limerick must pay increments to staff that could totalover €2 million. The ruling affects 150 staff and concernsincremental payments which have not been paid since 2008. Adisability campaigner said the Brothers of Charity in Galway isbeing forced to divert funds away from frontline services in orderto pay wage increments. Eamon Walsh of Hope4Disability saidthat the Brothers of Charity had been diverting funds fromfrontline services for the past five years in order to pay theincrements and that, in light of further cuts to the HSE budget,this was unsustainable.

BROTHERS OF CHARITY ORDERED TO PAY €2 MILLION IN STAFF INCREMENTS


N E W S U P D AT E

President Michael D. Higgins announced that Professor Gerard Quinn would beamong his nominees to the Council of State in early January. Professor Quinn is theDirector of the Centre for Disability Law and Policy at the NUI Galway School ofLaw. He has worked on many legal issues affecting people with a disability—hisprincipal areas of concern being the need for modern capacity law and the UNConvention on the Rights of Persons with Disabilities. He is a former member of theIrish Human Rights Commission and regularly speaks at home and abroad ondisability law and policy issues. He spoke at Inclusion Ireland’s 2011 conference onthe law and people with an intellectual disability.

The seven nominated members of the Council of State will sit with formerpresidents, taoisigh and chief justices, along with ‘ex officio’ members including theTaoiseach 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, MichaelFarrell; Prof Deirdre Heenan of the University of Ulster; Prof Gearóid Ó Tuathaigh, Professor Emeritus in History at NUIGalway; community activist and social entrepreneur Ruairí McKiernan; and Irish emigrant rights campaigner Sally Mulready.

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 willbe held in Whites Hotel in Wexford on 30–31 March. Minister Howlin will speak on the topic of public sector reform and itsimpact on disability services. The theme of the conference is ‘A Home I Choose’. Other issues to be addressed will includethe National Housing Strategy and the Congregated Settings Report. The conference will provide attendees withinformation on what the future holds as a result of these new policy developments in housing. Further information isavailable at www.inclusionireland.ie.

DISABILITY CAMPAIGNER APPOINTED TO COUNCIL OF STATE

MARINO SCHOOL, BRAY EMBRACES THE COMMUNITY SPECIAL SCHOOL MODULE

Marino School was first established in 1956. Since then the school has offerededucation to pupils with physical and multiple disabilities. Marino School is nowembarking on the development of a Community Special School model. This meansopening its doors to a broader profile of pupils—to reflect the need and demand forsuch 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 toprovide an appropriate educational placement for pupils presenting with a diverserange 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, SpecificSpeech and Language Disorder, Assessed Syndrome and Multiple Disability.

Marino School provides a highly supported learning environment; a modifiedcurriculum to suit individual needs; an Individual Education Programme based onpupil strengths and needs; a Links Programme offering pupils an opportunity to attendand participate in curricular programmes and social activities in local mainstreamprimary and post-primary schools; a Behaviour Support Plan to meet individual needsas appropriate; use of computers, Smart Boards and Assistive Technology to facilitateand enable access to the curriculum; a School Leavers Programme incorporating WorkExperience in the community; Inclusive Physical Education programme includingBoccia, Wheelchair Hurling, Horse-riding and Swimming; low pupil teacher ratio;experienced teachers with qualifications in Special Educational Needs; Special NeedsAssistants with specific skills and training in supporting pupils with special needs.Enrolling Now for September 2012.Principal: Mai Byrne. Tel: 01–2829807, Email: [email protected].

Enrolling now for September 2012

Community Special School

Church Road, Bray, Co. Wicklow.

Tel: 01 282 9807

www.marinoschool.ie

MARINO SCHOOL


N E W S U P D AT E

OIREACHTAS JUSTICE COMMITTEE HEARS PRESENTATIONS ON MODERN CAPACITY LAW

On 22 February, the Joint Oireachtas Committee onJustice, Defence and Equality heard oral presentationsfrom ten groups on the need for modern capacity lawin Ireland. Presentations had originally been scheduledfor late January, but were postponed. In August 2011the Oireachtas Committee asked groups andindividuals to submit their views on modern capacitylegislation and over 70 submissions were received. Anumber of organisations were then invited to present

Starting any new year there is always an opportunity to try to do thingsbetter and, for many, making new year’s resolutions.

Issue 85 of Frontline (December 2011) presented a fresh look in amore competitive publishing environment. However, maintaining andincreasing the subscription base is becoming extremely challenging andthe Editorial Board is forced to rethink whether the magazine shouldbecome only an electronic publication (e-magazine). The Board is,however, aware that many people like to have a hard copy of themagazine.

The Editorial Board would welcome the views of the readership onwhether Frontline should only be in an electronic format. An electronicformat will enable the Board to manage the cost base with a greaterpossibility of sustainability going forward. Ideas and comments to theEditor: [email protected].

The Frontline Editorial Board recognises that individuals and agenciesface many demands, and there may be difficulties meeting themagazine’s subscription price (although the rates charged have not beenraised for three years).

As a publication, Frontline relies on the voluntary effort of a number ofdedicated people who also have to balance competing demands on theirtime and energies. Frontline needs active support, however small, butsupport nonetheless.

The themes for forthcoming issues are set out below:

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 tothe themes of the above issues, as well as articles onpersonal experience, events, conference reports, etc.Frontline provides an opportunity to showcase theachievements of people with intellectual disabilities andexamples of innovation and good practice within services.

FIGHTING TO SURVIVE

The Minister for Health James Reilly TD announced in January the allocation of €1million in additional funding to addressthe needs of children with autism in 2012, with an additional €1million during each of the following two years—€3millionin total. This funding, which will be reflected in the HSE’s Service Plan, will be focussed on addressing waiting times forspecialist therapy services for children who have been diagnosed with autism and on developing Early Intervention Teams.

ADDITIONAL FUNDING FOR CHILDREN WITH AUTISM

at an oral hearing on the issue. The government hascommitted to publishing a new capacity bill in this Dáilsession. A new bill will replace the long outdated Lunacy(Regulations) Act of 1871 which has been widelyacknowledged to have resulted in an archaic system thatdoes not respect the rights of people who are deemed tolack capacity. Among the groups due to present areInclusion Ireland, the Law Reform Commission and theIrish Human Rights Commission.


N E W S U P D AT E

THE INTERNATIONALEUCHARISTIC CONGRESS 2012:Invitation to participate, contribute and share in the mission of IEC 2012.

Following a discussionwith the IEC nationalcommittee in 2011, anumber of initiativeshave arisen for people toparticipate in the eventsof IEC 2012. At aconference inpreparation for IEC2012, held in Navan lastOctober, ‘Thomas’ fromthe L’Arche communityin Belfast shared his lifeand faith story. Thetheme on which Thomasspoke was ‘Society—allparts required for correctassembly: The place ofpeople with disabilities ascontributors to society andas citizens, equal indignity, unique in personand gifts’.

Opportunities and Events at the Congress 10–17 June2012* People can register as a volunteer for the congress—

details are given on the IEC 2012 website. * There will be two workshops in the RDS on 15 June

where people with disabilities will take a lead role. BrDonatus Forkan (Prior General of the HospitallerOrder of Saint John of God) and Fr Niall Ahern(Elphin Diocese) will introduce the workshops. (Moreinformation can be found on the IEC programmemepage).

* Growing Wheat ‘Fruit of the earth and work ofhuman hands’ is a key symbol connecting the earth,our work, food for our body in bread and our soul inthe Consecrated Eucharist - Holy Communion. Anumber of disability services are growing display potsof wheat to distribute in their community churches,schools, nursing homes for the elderly, etc. Others aregrowing-on small pots of wheat for people attendingthe Congress to take home with them. (Again, thereare further details on the IEC website under ‘PrimarySchools.)

* Volunteer groups are wanted to manage the prayergarden at the Poor Clare community (onSimmonscourt Road, beside the RDS), providing amemorable occasion for the public attending theCongress. Each day will be available to a differentservice group of volunteers. If you or your servicewould like to take on this role for a day, pleasecontact Paul on 087-7902563.

Paul Henry

Dear Editor,As Issue 86 of Frontline focuses on autism in Ireland, Iwould like to draw your readers’ attention to themisleading content of a recent article in the IrishExaminer by Tony Humphreys (2 February 2012). Iprobably should be drawing their attention away fromit, as it is likely everyone reading Frontline has alreadyreacted to the amazing, surreal content of the articleand wishes in this day and age that none of us wouldhave to listen to such archaic and totally unsubstantiatedclaims.

Many of Dr Humphrey’s statements were simplyfactually wrong, not to mention inflammatory andgrossly insensitive. He demonstrated an incredible lackof insight as to how his missive would be received. Howdoes someone who purports to be a psychologistdedicated to improving the mental health of othersmake such bold, cold and factually inaccuratestatements? I’m dumbfounded, but then again this isnot an individual who has any involvement whatsoeverwith the autism community in Ireland. In fact a numberof his statements clearly demonstrate that he does notknow even the basics about the autistic conditions. Heinaccurately interpreted the results of Dr Sami Timimi’sresearch (as confirmed by the author himself on RTÉ’sLiveline), and by not acting quickly to correct any‘misrepresentation, exaggeration, distortion or error’, hecompounded those inaccuracies. Where was he whenparents and individuals with an ASD were calling intothe radio programme?

There is a vast body of international researchconfirming the autistic spectrum disorders asneurodevelopmental, genetically linked conditions.Neither parents nor anyone else can cause it after birth. Ihave had the privilege to meet more parents of childrenand young adults on the autism spectrum than mostother professionals in Ireland and, yes, some of them arealso either on the spectrum or have numerouscharacteristics. This doesn’t stop them from beingincredibly emotionally involved with their child, loving,caring, dedicated to their best interest, and willing toinvest their time, finances and emotional resources tosupport them. This has been my experience, and that ofmy colleagues. Since Dr Humphrey’s article appeared, Ihave heard from many autism professionals—each andevery one is utterly appalled at the emotional upsetcaused to these parents whom we admire so much.What Dr Humphreys wrote was psychobabble from mid-previous century. And to the affected parents, those ofus who know you, know that you are nurturing, loving,affectionate, patient, warm, tender and kind. Shame onTony Humphrey’s for daring to say otherwise.

Rita Honan, Ph.D.,Registered Psychologist,

Associate Fellow, Psychological Society of Ireland,School of Psychology, Trinity College Dublin.

L E T T E R T OT H E E D I T O R

Minister for Health, Dr James Reilly T.D.,introduces our feature on autism forparents, 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. Yourchild’s expectation of a normal future seems irrevocably constrained, and the realisation is infinitelypainful 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 thiscondition as possible. They quickly learn that the Autism Spectrum Disorder is exactly that – aSpectrum that ranges from being so severe that longterm care is the only option, to being so mild that itis 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 madein this area, so much more remains to be done. What all parents want for their child is for them toreach their full potential and it is our duty as professionals, and my duty as Minister for Health, toensure 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 healthservice has sustained a €2.5 billion cut to its budget over the past 3 years. We must strive to do morewith less. Notwithstanding that, €1 million extra is available this year for the early detection andtreatment 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 onmy desk. It requires careful consideration before action. But what’s immediately clear is that some areasin our country have no service, whilst others have a Rolls Royce service. Not good enough. We may notbe able to afford a Rolls Royce service everywhere, but we must have a fair and equitable distribution ofservice for all our children.

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

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

If you’re the parents of young children just recently diagnosed with autism, you may believe the futurelooks 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

FEATURE:IN IRELAND


A LABYRINTH?

It is my view that, in a historicalsense, a fundamental flaw has beento categorise supports offered to

individuals with autism into ‘children’s’and ‘adult’ services. Whilst this mayhave proven useful from anadministrative, funding or governanceperspective, unfortunately it has attimes resulted in compoundingdifficulties for the individual availing ofservices. A parent does not stop being aparent suddenly because their childturns 18 years of age.

This ideology has contributed to thedifficulties experienced by individualsduring times of transition and it hasencouraged a culture whereby familiestend, understandably, to think in theshort term only, out of a necessity tosurvive rather than flourish. The recentNational Review of Autism Services, Pastpresent and way forward’ emphasises therequirement for a ‘life span approach’.

It is crucial that in future theindividual with autism be viewed in aholistic manner and that their lifecourse be viewed in its entirety whenplanning the necessary supports. I havebeen in the sitting rooms or at thekitchen tables of many mothers andfathers and listened to their frustrationover the lack of information available tothem at crucial times in the lives oftheir autistic child.

My advice to individuals, parentsand families is to take a proactiveapproach, to consider all of thepotential supports available—toresearch, visit and review all of theservices, in order to become aware of

the options in the years ahead. It makessense to me that parents should bethinking consistently ahead and makeinformed decisions based upon thequality of supports and the evidenceavailable.

Difficulties experienced by theindividual with autism and their familymay also be compounded by the failureby sectors, departments and agencies towork collaboratively. The Vision forchange report (2006) stated that ‘theneeds of children with autism arediverse and require significant inputsfrom the educational system in additionto health’. Since that original Task Forcereport, there regrettably remains a lackof cohesion between the Department ofEducation and Science, the NationalCouncil on Special Education and theHealth Service Executive. These deficitscan only be addressed through afocussed and dedicated commitmentfrom all stakeholders not only in termsof the sectors traditionally associatedwith those with special needs, but alsofrom sectors considered to bemainstream.

For the parents of the young childwith autism, the Disability Act (2005)and the legislative right and entitlementto an early assessment were a significantlandmark. The failure of the state tomeet the deadlines set out for thecommencement and completion ofassessments is worrying, to say the least.In part this is due to the lack of fundingfor the necessary multidisciplinary staffrequired to carry out the assessments.There is a requirement for the present

government to prioritise these youngchildren and ensure that adequateresources are provided.

Local HSE offices are working underextreme pressure as they attempt toshare what are currently inadequateresources apportioned nationally tomeet the needs of a rapidly growingautistic population. However, there isalso a requirement to review the way inwhich the current system is operating.Approximately 40% of children referredwith suspected autism subsequently arefound not to have it, which results invaluable resources being inappropriatelydirected.

The Autism Act (2009) in the UKemphasises the need for an ‘increase inawareness and understanding of autismamong frontline professionals and staffin the public service and developingspecialist training for staff in health andsocial care’. A similar exercise should berolled out in Ireland.

The Review of the operation of theDisability Act 2005 (2011) year statedthat ‘there is an unevenimplementation of and lack ofconsistent approach to the assessmentof needs process’. There needs to beequity of service and supports regardlessof geographic location. To put itbluntly, the quality of the supportsavailable should not be reliant on theautistic child or adult’s address.

Just as significant, in my eyes, is thefailure of government to enact the pieceof legislation whereby the entitlementto early assessment is available forchildren aged 5–18 years. This is havinga detrimental effect upon many youngpeople with autism, not to mentiontheir circle of supporters. Without thediagnosis they cannot receive thesupports that they require and valuabletime is lost. The National Review ofAutism Services highlights thesignificant shortage of multidisciplinarystaff to manage the size of the caseloadsfor both diagnosis and intervention.

Also, the growing emphasis by theHSE upon targeted funding in order toput in place such multidisciplinarysupports for children has resulted in alack of recognition for the needs ofadults with autism. We must ensure

Parents of a child with autism are confronted with manybewildering questions. Will my child live a life ofindependence? What impact will the challenges that my childwith autism faces have on the lives of his or her siblings andhow can I ensure that my son or daughter will be cared forwhen I am no longer able to do so myself? These concerns areperfectly normal and understandable, however, on a widerlevel there are many factors that compound these difficulties.Joe McDonald attempts to answer some of the queries.


that this population does not become alost generation.

The new government’s manifestoon disability is keen to allow theratification of the UN Convention ofRights of Persons with Disabilities. Thisis welcome, particularly when eventoday individuals with autism cannotaccess something as basic as dental carewhen it is required. It is essential thatthese rights are embraced and that realand tangible outcomes result as aconsequence.

The amount of new fundingavailable in 2011 for young peopleleaving school and making thetransition into adult services was cut bymore than 50% (compared to 2010). Itappears at this stage that there is nonew funding being made available forschool leavers in 2012. This will resultin significant stress for families livingwith autism.

What we now require is acommitment from government tomulti-annual funding to those withautism. Funding within Health andSocial Services that is ring-fenced forthose with autism should in no way beused to shore up deficits in otherhealth-service areas.

Service Providers such as the CorkAssociation for Autism could workmore effectively, efficiently and moreeconomically if they could plan 3, 4 or5 years in advance in confidence. Thisis not possible at present. Core budgetshave been reduced by approximately14% since 2008, whilst demand forsupports has never been greater, with agrowing expectation in terms ofquality.

The National Intellectual DisabilityDatabase (NIDD) is the current tool forwhich approximately 70% of yearlyfunding in allocated. There are twodifficulties with this. The NIDDresearch shows clearly there will be anenormous demand for residential, dayand respite supports over the comingtwo years. The actual levels of fundingbeing made available for thisanticipated demand are only a fractionof what is actually required. It is clearnow that there will be significant levelsof unmet need. Government must notignore these statistics.

The second issue in respect of theNIDD is the fact that many individualswith autism are simply not on it—either through a lack of awareness of itsexistence, or the fear of stigmatisationon being placed on such a database.

The danger is that their needs may notbe captured through the research and,subsequently, not planned for in abudgetary way.

On a more positive note, theimmanent auditing of service providersby the Health, Information and QualityAuthority (HIQA) is a welcomedevelopment—welcomed by all serviceproviders including the CAA. This willensure that quality-assured person-centred supports become the norm intothe future.

Similarly, the recently completedreview of adult day services in thiscountry and the subsequent Newdirections initiative is also a positive stepforward for those school-leavingchildren entering adult day services.

The recently completed Review ofdisability policy is potentially a landmarkreport. It points a path towards a newway in which those with autism may besupported in this country—a shift awayfrom compliance with rules to anattainment of outcome-based standardsand a demonstrated commitment tocontinuous quality improvement.

Each person with autism will havean assessment of needs shaping thatindividual’s support plan. In turn thiswill be used to identify anindividualised budget that is effectivelyattached to the person and they willhave an input into how this resource isused to meet their needs. This may betermed direct payments or brokerageamongst other labels. The result,regardless of the label, should be greaterempowerment for the individual withautism. This could be revolutionary, if itis implemented effectively. The CAAwelcomes such a development. Wepride ourselves on our standards ofservice provision. The individualisedperson-centred supports and the close

working relationship we have with thefamilies who use our service is viewed asone of our core strengths. Real,meaningful and effective supports thatoffer hope, improve the quality of lifenot only for the individual with autismbut also for their circle of support.

The challenge that lies ahead is topreserve and continue the good workthat has been carried out in what will bean extremely challenging next fewyears—to embrace the positive policychanges that I have outlined above andto ensure that they result in realmeasurable and tangible results forthose with autism. I believe that despitethe current economic crisis, there is areal opportunity to embark upon newways of thinking when it comes toautism and I look forward to workingwith individuals, families and allstakeholders in achieving qualityoutcomes in the years ahead. FL

Joe McDonald has a Bachelor of ArtsDegree in Applied Management (Not forProfit), a Diploma in Health ServiceManagement, a Diploma in Health &Social Care and is currently completing aMaster Of Arts Degree in LeadingInnovation & Change. He has worked for 6years with individuals with acquired braininjuries, 3 years in general IntellectualDisability and for the last 9 yearsexclusively in the area of Autism andAsperger Syndrome. He has been Director ofServices for the Cork Association for Autism(CAA) for the last seven years.The CAA has successfully merged the twokey issues of advocacy and Service Provisionand in the process offers high quality, trulyperson centred supports based upon theindividuals ability, aspirations and visionfor the future that they desire. The CAA is firmly rooted in the socialmodel of disability.

The recently completed Review of disability policy is

potentially a landmark report. It points a path towards

a new way in which those with autism may be

supported in this country—a shift away from

compliance with rules to an attainment of outcome-

based standards and a demonstrated commitment to

continuous quality improvement.

A U T I S M


APPLIEDBEHAVIOURANALYSIS (ABA) AND AUTISMBehaviour Analysis has a long history in Ireland andBehaviour Analysts have operated in Irishuniversities since the 1960s. In recent years, interestin the area has surged in response to theencouraging results obtained during research intocomprehensive behavioural interventions for peoplewith autism. There are four Irish universities currently offering postgraduate qualificationsin Behaviour Analysis and the number of Board Certified Behaviour Analysts (BACBs)continues to increase. Niall Conlon explains.

The response of Irish consumers tobehavioural interventions forautism has been very positive,

when compared to the alternativeinterventions (Grey, Lynn and McClean2010; Keenan, Dillenburger, Doherty,Byrne and Gallagher 2007) and evidenceof these interventions’ effectivenesscontinues to accumulate (Virués-Ortega2010). In spite of this, a great deal ofmisinformation exists regarding ABA(Department of Education and Science2001) and, while many Irishprofessionals have embraced ABA, somecontinue to hold inaccurate or outdatedviews of behavioural interventions forpeople with autism (Ridge and Guerin2011).

What is Applied BehaviourAnalysis?ABA is the applied arm of the science ofbehaviour. It is sometimes referred to as amethod, but is better thought of as ascientific approach to solving problemsof social significance. The treatmentpackage that a behaviour analystrecommends for a client will most likelyfeature a range of evidenced-basedbehavioural techniques that are anchoredin the philosophy of behaviourism.Behaviour analysts use the scientificallyvalidated principles of learning to modifythe environment in order to improvemeaningful behavior, with a view toimproving the quality of life ofindividuals, families and communities.Specific behavioural teaching proceduresinclude precision teaching, videomodelling, pivotal response training,

discrete trial instruction, activityschedules, behaviour chaining,functional communication training,peer-mediated social skills training, self-management and natural environmentteaching. These procedures have beenemployed to establish and improvebehaviours related to communication(Bondy and Frost 2001), daily livingskills (McClannahan, MacDuff andKrantz 2002) and academic skills(Wacker and Cooper 1996). Similarly,empirical studies have shown ABA

interventions to be effective in treatingmany forms of problem behavior,including self-injurious behaviour(Iwata and Lewin 2002), aggression(Oliver, Oxener, Hearn and Hall 2001),and pica (Piazza, Roane, Keeney, Boneyand Abt 2002). There have also beenseveral studies examining theeffectiveness of ABA teaching strategieswith children and adults in Irishcontexts (e.g. Murphy and Barnes-Holmes 2010; Lydon, Healy and Leader2011; McDowell, Duffy and Kerr 2007).

ABA is closely associated with autism owing to the dramatic effects of earlyintensive behavioural intervention (EIBI) reported in some studies. In one of thefirst studies of EIBI, Lovaas (1987) found that 48% of children who received EIBIachieved normal functioning and progressed to mainstream schools. The studyused matched control groups and multiple pre-treatment and follow-upmeasures. Lovaas (1987) reported average gains of 20 IQ points for participantswho experienced 40 hours per week of behavioural intervention for two yearsor more. In contrast, those in two control groups failed to show similar gains. Afollow-up study by McEachin and his colleagues (1993) determined that theintellectual and academic gains of the original EIBI group remained stableseveral years after treatment.

Since Lovaas’ original EIBI study, there have been several replications(including randomised control trials) that demonstrate the powerful effects ofEIBI (Dawson et al 2010; Eldevik, Eikeseth, Jahr and Smith 2006; Howard,Sparkman, Cohen, Green and Stanislaw 2006; Remington et al. 2007). Therehave also been examinations of the effectiveness of EIBI in Irish contexts (Healy,Leader, O’Connor and Kenny 2008; O’Connor and Healy 2010). Reichlow(2011) examined 5 recent meta-analyses of EIBI for children with autism andfound that it was a ‘powerful intervention capable of producing large gains inIQ and/or adaptive behaviour’. It has also been found to be an extremely cost-effective intervention (Chasson, Harris and Nealy 2007).

Early Intensive Behavioural Intervention


Is ABA autism-specific?ABA is not an autism-specifictherapy. ABA has also been shown aseffective to use with a number ofpopulations including schizophrenia(Wilder, Masuda, O’Connor andBaham 2001), attention deficithyperactivity disorder (Northup et al.1997) Down Syndrome (Dalton,Rubino and Hislop 1973), andfeeding disorders (Piazzaet al. 2003),as well as typical learners (Darrig etal. 2005). ABA is commonlyassociated with autism because ofwidespread coverage of itseffectiveness for people with autism.

Who designs and implementsthe ABA programme?ABA programmes have beensuccessfully implemented by avariety of professionals andparaprofessionals including doctors,nurses, teachers, care workers, ABAtutors and special needs assistants.ABA programmes have also beenproven effective when implementedby ABA professionals. However, itshould be noted the internationallyrecognised Behaviorist AnalystCertification Board recommends thatonly Board-certified behaviouranalysts are sufficiently qualified andexperienced to design behaviouralinterventions (BACB 2004).

What does a behaviour analystdo?When a behaviour analyst beginsworking with a person with specialneeds, they assess the individual’scurrent abilities and needs in order toselect goals that will make ameaningful impact on the life of thelearner in question. The assessmentwill typically involve examiningcontextual factors such as the roomin which behaviour occurs;motivational factors such as hungeror thirst, verbal antecedent eventsand the consequences that result inchanges in the probability thatbehaviour will occur in the future.Client, parental and caregiver inputis crucial at this point of theintervention and the people whocare for the client will later be taughthow to help implement theprogrammes the behaviour analystputs in place.

When the behaviour analystbegins to teach the target skills to theindividual, he or she typically begins

by breaking a complex skill downinto smaller steps andsystematically provides praise orother rewards in response to theindividual’s behaviour. Motivationis a crucial part of any behaviouranalytic intervention and thetherapist will frequently makealterations to the environment thatincrease the individual’s motivationto learn a particular skill.

Typically, ABA interventionsprovide multiple opportunities for alearner to practise and master a skillin order to maximise the number ofopportunities for the learner to

experience success. Similarly,individuals with autism sometimesstruggle to generalize, thereforebehaviour analysts take care toteach skills in a way that will leadto generalisation to new settings,conditions and people.

In making judgments about aclient’s progress, behaviouranalysts avoid the use of subjectiveopinion and instead focus oncarefully collected and objectivelydescribed data. These data are thencarefully analysed and used tooptimise the effectiveness of theprogramme for the client.

In Ireland, autism treatment frequently involves the use of an ‘eclectic’treatment model; however, the research indicates that ABA is generallymore effective than an eclectic approach. Howard et al. (2005) compared 4months of EIBI for children with autism , with two other interventiongroups. The first group received an intensive, ‘eclectic’ autism treatmentthat included the use of the TEACCH methodology, sensory integrativetherapy and a limited amount of ABA therapy. This treatment was deliveredfor 30 hours per week during 1:1 or 2:1 instruction sessions. The secondgroup received non-intensive public special education. Participants werecarefully matched to groups and, although the groups showed nosignificant differences on pre-treatment measures, the EIBI groupdemonstrated an average increase of 31 IQ points, while participants in theother two treatment groups demonstrated an average increase of just ninepoints. Similarly, Remington and colleagues (2007) found EIBI to be moreeffective than standard educational services or eclectic services.

It is important to note that adopting an eclectic approach is not thesame thing as working in a multidisciplinary team. It is common forbehaviour analysts to work with other professionals, such as occupationaltherapists, speech therapists, doctors and physiotherapists, when designingEIBI programmes similar to those described in the empirical record.

Eclectic versus ABA


How do behaviour analysts dealwith challenging behaviour?Behaviour analysts are frequentlycalled into schools, hospitals, homesand residential service settings to dealwith challenging behaviours such asself-injury and physical assaults. Themain tool that behaviour analysts useto decrease challenging behaviour isthe Functional Behaviour Assessment(FBA). Using an FBA involves anexamination of how the individualinteracts with their environment, andaims to discover specifically when,where and why problematic behaviourarises. It is not always easy to recognisethe cause of any particular behaviourand it can be particularly difficult toidentify the function of challengingbehaviour in people with specialneeds, because they may also havedifficulties in communicating. Thebenefit of the FBA is that it helps us tolearn more about the causes orfunctions of challenging behaviourand this knowledge can then be usedto formulate an individualised effectivetreatment for a particular individual’schallenging behaviour.

There are two main types of FBA:descriptive assessment and indirectassessment. Descriptive assessmentsinvolve the direct observation of thebehaviour in a natural setting. TheABC sheet can be used in directobservations, or there are alternativessuch as scatterplots, or speciallydesigned data collection forms.Indirect assessments get their namefrom the fact that the data theyprovide is based on recollections of thebehavior, rather than directobservations. Indirect assessments aregenerally used in conjunction withforms of descriptive assessment. Thereare many interviews, checklists andrating scales that have been speciallydesigned for functional assessmentsthat can be carried out with parents,

siblings, teachers or other significantpeople in the life of the individual,which can be used to guide directobservations. The most precise form offunctional assessment is known as afunctional analysis. While verypowerful, a functional analysis is themost difficult form of functionalassessment to conduct properly andshould only be attempted by a board-certified behaviour analyst withrelevant experience.

The functions of behaviour can bedivided into those that are used toobtain positive reinforcement andthose that are used to obtain negativereinforcement. Positive reinforcementinvolves obtaining something. Forexample, the function of a self-injurious behaviour might be to obtainattention from a parent, or it might bean inappropriate way of accessing apreferred toy, activity or snack. It couldalso be automatically reinforced by therelease of endorphins within the bodywhich cause pleasant physicalsensations. Negative reinforcementtypically involves stopping, avoiding orpostponing some negative condition.For instance, a child might run away toescape a barking dog, or they mightscratch their skin to remove an itch.

Once a behaviour analyst hasenough information about thecircumstances in which thechallenging behaviour occurs, he orshe can form a hypothesis about itsfunction and put in place anintervention designed to decrease itsfrequency. Some challengingbehaviours have single functions,while others may have multiplefunctions and any intervention will beindividualised to the needs andcapabilities of a particular individual.As a result, every intervention will bedifferent. However all behaviouralinterventions will pay particular

attention to the function of achallenging behaviour and will seek toteach replacement behaviours thatmatch its function where possible.

Have any expert groupsrecommended ABA?ABA has been recommended as atreatment for autism by respectedorganisations such as the US SurgeonGeneral, the American Academy ofPaediatrics and the New York StateDepartment of Health. A recent report byIreland’s National Council of SpecialEducation (NCSE 2011) foundbehavioural approaches to be among themost effective for treating students withemotional and behavioural difficulties,including students with autism. TheNational Standards Project (2009)conducted the largest review of thesubject of autism intervention andconcluded that the overwhelmingmajority of effective treatments forautism were developed from ABA.

For more informationIf you would like to find out more aboutABA or to find a local BCBA, visithttp://www.bacb.com. FL

References with the editor.

Niall Conlon attended Trinity CollegeDublin where he was awarded a MScPsychology (Applied Behaviour Analysis)and a Postgraduate Diploma in AppliedBehaviour Analysis. He is a studentcommittee member of the Psychology Societyof Ireland’s Division of Behaviour Analysisand a member of ABA Ireland’s executivecommittee. He worked for three years as anABA tutor at the Applied Behaviour AnalysisSchool for Children with Autism inKilbarrack Dublin and is currently employedby St Catherine’s Association, Wicklow, as abehaviour support worker.

EIBI was developed for young children with autism, and as such it may not beappropriate for older children and adults with autism; however, there are alternativeapproaches that cater to the needs of older individuals (McClannahan, MacDuffand Krantz 2002; Palmen, Didden and Lang 2012). ABA interventions for olderlearners can take place in a variety of settings including schools, residences, orworkplaces. In comparison to EIBI, these interventions focus more on developinggroup participation skills and independent daily living skills. Research indicates thatthese interventions can be effective in teaching older children and adults withautism a variety of new skills (McClannahan et al. 2002).

ABA with older children and adults

A U T I S M


The proposed criteria for DSM Vfor autism is a matter of majorconcern for child and

adolescent psychiatrists. The newcriteria are inappropriately narrow andwill leave many patients now meetingDSM IV criteria losing their diagnosisand their services for autism. You andShen (2011) showed that only 60% ofcases with autism DSM IV met newcriteria for DSM V. The new criteria goback to Kanner’s Autism (1943) andare narrow criteria which don’t takeinto account current research and thebroader autism phenotype, which isautism as we meet it in clinicalpractice. Kanner’s Autism would meetADI criteria, the gold standard forresearch on autism, but notappropriate clinical practice. AdamFeinstein (2010) noted that at theInternational Meeting for AutismResearch in London in 2008 many ofthe most highly regarded researchersin autism in the world ‘lambasted thetool (ADI-R) for missing many cases ofautism’, and that it was ‘an expensiveand ineffective instrument’. It isextremely expensive and it isprohibitive for the developing world,and it inhibits the possibility ofresearch in autism in developingcountries if they wanted to bepublished in international journals. Atthe 2008 meeting which I attended, Iheard researchers from Australiacomplaining about its prohibitivecost. Professor Dorothy Bishop,Professor of DevelopmentalNeuropsychology at the University ofOxford, criticised the ADI-R for thevast amount of time it takes for‘training’ in the use of the instrument,‘time for administration and time forscoring, and consensus coding’(Feinstein 2010). Professor Bishop

correctly pointed out that ‘if youcould be shown that there were realbenefits in accuracy of diagnosis fromadopting this lengthy procedure’ thenshe would be happy to go along withthe tedious assessment procedure andinstrument (Feinstein 2010). There isabsolutely no evidence for thistedious long-winded assessmentprocedure, particularly in clinicalpractice. Professor Bishop correctlyconcludes that ‘the originators of theinstrument have never demonstratedthat you actually need such a longprocess—it is really more an article offaith to them’ (Feinstein 2010).Professor Bishop also points out thatin relation to the ADI-R-ADOS thatthere are ‘plenty of children whocome out as meeting criteria on oneinstrument only, and there seem tobe no sensible guidelines on how toproceed, other than to seek expertclinical opinion.’ Professor Bishoprecommends ‘doing studies to seewhat is the minimal set of items youhave to get reasonable diagnosticaccuracy and I doubt that we reallyneed a three hour interview for eachcase’ (Feinstein 2010).

Using narrow criteria for autism,Baird (2008) pointed out that you geta prevalence of autism of 25 per10,000 when you use these criteria.When you use a broader autismcriteria (Baird et al 2006), found thetrue prevalence of 116 per 10,000.Ventola et al (2006) showed that theADI-R was significantlyunderdiagnosing toddlers. I amcontinuing to see parents of childrenwith autism who come to me in greatdistress and tears because they havebeen told their children do not meetcriteria for autism based solely on thistest, when it is absolutely clear to me

and parents that the child has theautism broader phenotype, that isAutism Spectrum Disorder. It looks likenow that I am going to see far more ofthese distressed patients if DSM V isbrought in, in its present form, whichappears likely—although they are stilltaking submissions on DSM V autism. Idon’t think parents should have tosuffer unnecessarily because of theabove reasons. Their energy should beput into therapeutic activities for theirchildren, not having to go from oneprofessional to another to get adiagnosis. DSM V will have AutismSpectrum Disorder, but not underPervasive Developmental Disorder.DSM V is creating a new category(social communication disorder)separate from autism. This will notoccur in ICD II. In my view, this newcategory is not a separate category, butpart of autism. FL

ReferencesFeinstein, A. 2010 A history of autism.

Wiley.Baird, G., 2008 (Personal

Communication)Baird, G., Simonoffe, Pickles, A.,

Chandler, S., Loucas, T., Meldrum,D., Charman, T. 2006

Prevalance of disorders of AutismSpectrum Disorder in a populationcovert of children in South Thames,Lancet, 368, July 15, 210-15.

Ventola, P. et al. 2006, Agreementamong four diagnostic Instrumentsfor Autism Spectrum Disorders intoddlers, Journal of Autism andDevelopmental Disorders, 36 (7), 839-47.

You, Y. and Shen, C. 2011 A pilot studyof the diagnostic performance ofDSM IV-V in relation to autism, NAJMed, 4 ( 3), 116-123.

Prof. Michael Fitzgeraldcomments on the proposednew criteria for DSM V forautism and offers hisconsidered opinion of its impacton both parents and children.

THE FUTURE OFDIAGNOSTIC

CLASSIFICATIONIN AUTISM


Last week I met with the parents ofa 50-year-old woman, Mary, whohas autism and intellectual

disability. After 20 years living in acongregate setting, Mary has finallybeen provided with her own home anddoes not have to share it with otherpeople. Mary talks about this transitionas her ‘romotion’. The meeting withMary’s parents was to reassure themthat Mary is adapting well to her newliving arrangement and has shown asignificant decrease in her levels ofstress and anxiety associated with herdiagnosis of autism. We were able toshare with Mary’s parents the greatstrides that Mary continues to make interms of new life experiences—her first-ever train journey, her first trip to thecinema and her commitment to theimpending odyssey of travelling to visither brother and his family in the southof the country for the first time. It wasonly when the conversation pausedthat it became clear that Mary’s parentshad other concerns. They askedhesitantly, ‘…and are you sure thatMary has autism? We were toldpreviously that she had paranoidschizophrenia.’ Mary’s story is notunique.

When autism researchers arrived at aState Psychiatric Hospital nearPhiladelphia in the United States a fewyears ago, they found a 63-year-old manwho spoke at length about Elvis Presley,compulsively rocked in his chair andpatted the corridor walls. The man, whohad lived in the psychiatric hospital formost of his life, displayed what theresearchers considered the classicsymptoms of autism. His medical notes,however, said that he was ‘schizophrenicand mentally retarded’. When they delvedthrough the file the researchers learnedthat this man had been seen by Dr LeoKanner, the psychiatrist who had firstdescribed autism. In notes dated from1954, Kanner himself had given this mana diagnosis of autism. Later other doctorshad changed the diagnosis.

The researchers discovered 13 otherpatients with autism that had goneunrecognised in the hospital—about tenper cent of the residents they evaluated. Itdemonstrates how medical standards andsocietal attitudes toward the disorder haveshifted.

Over the past two decades, estimatesof the rate of autism have climbedtwenty-fold. Autism was once thought tobe an uncommon disorder. It is now

thought to occur in a least 1% of children.However, there is a 6-14 fold variation incurrent studies estimating prevalencerates. When Leo Kanner first describedautism in 1943, he based his observationson 11 children. By 1966, estimatessuggested prevalence rates of 4.5 per10,000 children. By 1992, 19 in every10,000 children were diagnosed withautism. Numbers have since skyrocketed.By 2006, the US centres for disease controland prevention (CDC) found that autismwas now affecting 90 in every 10,000child—in other words 1 in every 110children had a diagnosis of autisticspectrum disorder.

Many researchers believe that thisincrease has been driven largely by anexpanded definition of the disorder andmore vigorous efforts to identify it. We arenow just beginning to identify individualswhose autism was overlooked or who weremisdiagnosed in a previous era. If thisresearch demonstrates that autism hasalways been present at roughly the samerate as today, it would ease worries of a so-called ‘autism epidemic’.

In 1994 the Diagnostic and StatisticalManual (DSM 4) of the AmericanPsychiatric Association changed thecriteria for autism. There were two

AUTISM AND DIAGNOSTIC CONTROVERSIES

Ruth Connollyexplores theproblem ofdiagnostics over

the wide spectrumof autism, sometimes

leading to misinformation,misunderstanding andconfusion.


A U T I S M

17

significant contributions: the inclusion ofan unexpectedy popular new diagnosis,Asperger’s Disorder, and editorialrevisions that were meant to clarify thecriteria for autism (but may haveinadvertently lowered the threshold forits diagnosis).

No one knows for certain what causesautism, although genes and environmentboth appear to be involved. Researchersnow broadly accept that there is no singlecause of autism. It has been linked toepilepsy, digestive problems, immune orhormonal dysfunction, mitochondrialfunction and more. It is now clear thatautism is a neurobehavioural disorder.

Since autism was first identified, ideasabout the causes have swung to and frobetween nature and nurture. The earlyfocus on ‘refrigerator mothers’ resulted ina backlash and an emphasis on geneticfactors. In February of this year, Irishpsychologist Dr Tony Humphreys wrotean article in the Irish Examiner,questioning the assumption that autismis a scientific fact. Dr Humphriesproceeded to suggest that the reportedhigher rates of autism among children ofparents with careers in areas of science,maths and engineering, could beaccounted for by the fact that thesechildren ‘will need to find some way ofdefending themselves against the absenceof expressed love and affection andemotional receptivity’.

Such views were previously purportedby psychodynamic theorists, such asBruno Bettelheim (in the 1950s) whoblamed autism on the parents,considering them to be cold, logical, andunaffectionate (e.g. ‘refrigeratormothers’). After many years of researchautism is now known to be aneurodevelopmental disorder that isfrequently genetic in origin. This archaicand unsupported hypothesis implicatingparenting as a causative factor in thedevelopment of autism has caused greatupset among parents of childrendiagnosed with autism. Dr Humphreys’article has been criticised by thePsychological Society of Ireland, IrishAutism Action and the neuroscientist,Professor Simon Baron-Cohen, whoseresearch was questioned in the article.

Dr Humphreys specifically referred tothe distinction between diagnoses ofclassic autism (as described by Kanner in1943) and the new diagnosis of Asperger’sSyndrome, appearing for the first time inDSM 4 (1994). Dr Humphreys describesthe diagnosis of Asperger’s Syndrome as‘being used in an alarmingly and rapidly

increasing way, in an attempt to explainchildren’s more moderate emotional andsocial difficulties’. He is not alone inexpressing concern that with thislowered diagnostic threshold andresulting increased inclusivity, Asperger’shas brought autism to the fuzzyboundary with normal eccentricity andsocial awkwardness. There is growingconcern that some people aremisidentified as having the diagnosis ofAsperger Syndrome, when they reallydon’t.

According to Dr Catherine Lord, ofthe DSM-5 Neurodevelopment alDisorders Working Group: ‘If the DSM-4criteria are taken too literally, anybody inthe world could qualify for Asperger’s orPervasive Developmental Disorder—NotOtherwise Specified’. Over-diagnosiscreates the personal costs of stigma,reduced expectations and unnecessaryinterventions. The costs to societyinclude the diversion of scarceeducational and therapeutic resourcesaway from those who need them. Manyparents of children with severe autismare in favour of stricter criteria, arguingthat children who are most in needshould receive the available supports,rather than those with milder symptoms.

Perhaps we should listen to whatindividuals with autism are telling us.Autistic author, Donna Williams, in herbook called The jumbled jigsaw, haspresented a holistic model called autismas a fruit salad model. Williams proposedthat the severity of someone’s autismcould be linked to their degrees of co-morbid communication,sensory-perceptual, gut/immune,neurological integration, mood, anxietyand compulsive disorders a personinherited or developed, coupled withcognitive and learning style differencesand unusual personality trait collections.Williams suggested that these challengescame about via different combinationsof pathways including genetic

inheritance, toxic exposure and clashingsocio/sensory environments.

The view that there is no onecondition called autism goes some wayto help account for the heterogeneity ofthe condition. Autism spectrumdisorders are just that, spectrumdisorders. Research published in 2011suggested that where a child is assessedcan determine what diagnosis the childis given. ‘Clinicians at one centre mayuse a label like Asperger’s Syndrome todescribe a set of symptoms, while thoseat another centre may use an entirelydifferent label for the same symptoms.This is not a good way to make adiagnosis’, says the study’s leadinvestigator, Dr Catherine Lord.

DSM 5 proposes a radicalreorganisation in how autism is defined.Instead of separating classic autism fromAsperger’s Syndrome, there will be oneunified ‘autism spectrum’ disorder witha single criteria. The rationale is thatthere is no clear boundary between thetwo and that autism is one disorderpresenting with different levels ofseverity. The system also has theadvantage of raising the diagnosticrequirements for the milderpresentations of autism above thoserequired for Asperger’s Syndrome inDSM 5. It is hoped that this will addressthe issue of over diagnosis—however,only time will tell.

While researchers grapple to reachagreement on an arbitrary diagnosticclassification system, we can but hopethat people like Mary and her familywill never again be sentenced to a life ofbeing misinformed, misunderstood andprovoked by a system that did notrecognise her autism, and a social andphysical environment that has onlynow been sufficiently adapted to meetMary’s needs. FL

Ruth Connolly is Principal Psychologist withthe Muiríosa Foundation.

No one knows for certain what causes autism, althoughgenes and environment both appear to be involved.Researchers now broadly accept that there is no singlecause of autism. It has been linked to epilepsy, digestiveproblems, immune or hormonal dysfunction,mitochondrial function and more. It is now clear thatautism is a neurobehavioural disorder.


Agood friend of mine, a Liverpudlian,has recently been dating a lovelyLeitrim woman. Inevitably, after a

few months dating, the questions are posed: ‘Any sign of a ring?’ ‘When are you two goingto give us a day out?’ To which my buddyresponds with typical scouse humour:‘Steady on, it’s a marathon not a sprint!!’Caring for someone with autism requires asimilar attitude: it’s a marathon not a sprint.Change is slow, gradual, and not immediate.Strategies to promote inclusiveness,increased socialisation and to overcomesocietal barriers need to take the long-termview. Routines and practices can only berestructured in gradual, incremental form.

In my experience of adult men on theautistic spectrum who also live withvarying degrees of intellectual disability(ID), there are a range of approaches,attitudes and practices which, if notgenuinely therapeutic, can serve to ensureat least a safe and calm environment inwhich other, more therapeutic work canbe completed. Ultimately, thecomplicating factor in caring for peoplewith autism is the extent of ID alsopresent. It goes without saying that peoplewith autism do not usually need suchinterventions—this article is limited toaddressing issues where autism andintellectual disability are present

simultaneously. The normal, usualaccepted strategies for supporting peopleon the spectrum are complicated by thisadditional factor, thereby adding a degreeof complexity to the care equation.

Before outlining some strategies, itshould be noted that a multidisciplinarytherapeutic approach to care is ofparamount importance if we are to beserious about making advancements inquality care, and not merely accepting amaintenance approach to care.Unfortunately, the latter is often the mostwe can aspire to because of limitedfunding which results in a reducednumber of possible interactions fromassociated professionals such asoccupational therapists, speech andlanguage therapists, psychologists,psychiatrists, behaviour therapists andskills coaches. Ideally, a well-funded,multidisciplinary approach would be ofgreat benefit.

Interdisciplinary careSupport and assistance are sometimesavailable from some of the otherprofessionals referred to above, but this isoften only piecemeal because of thefunding issues, and so we do not alwaysachieve a coherent, integrated approach tothe individual’s care. In reality, much ofthis work falls on the shoulders of socialcare workers and nurses involved in directcare. Supports for family members are alsoconspicuous by their absence. While I amgeneralising, much work is also done andpositive interventions are forthcoming,however, I would suggest that a lack ofcohesive structures, difficulties withfunding and the lack of a common visionfor the person with autism and ID are, inessence, the greatest barriers to improvedcare. This lack of vision is found at variouslevels, both societal and organisational.Individual care organisations can takesteps to address some of these issueswithin their internal structures, but thefinancial aspect requires a completerethink on how we allocate funds, in orderto use them to maximise the quality ofcare offered. There is much talk within thehealth services of money following thepatient and this would invariably go someway to implementing a vision of how lifecould be for the citizen with autism.

So, how do we care for the adult whohas ID and is also on the autism spectrum?No one individual is the same as the next,and so care has to be tailored to theindividual. While we often ‘group’ peoplewith autism, their place on the spectrummeans that their needs and abilities differ.

CARING FORPEOPLE WITHAUTISM ANDINTELLECTUALDISABILITY

If you would help me, don’t try to change me to fit your world.Don’t try to confine me to some tiny part of the world that youcan change to fit me. Grant me the dignity of meeting me onmy own terms—recognise that we are equally alien to eachother, and that my ways of being are not merely damagedversions of yours. Question your assumptions. Define your terms.Work with me to build more bridges between us.

(Sinclair, 1992)


The care environmentGenerally speaking, structure andorganisation within the care residenceneeds attention. Chaos, untidiness,confusion, excesses of anything all tend tocomplicate the situation, even leading tooutbursts of challenging behaviour. The keyis to provide a low-arousal environmentwith a minimum number of stimuli toavoid overloading the senses. Routines andrituals are important and cannot bediminished in their significance for theneeds of the person with autism. Certaintylends to a sense of security, and predictableroutines allow the person with autism togain some control over an otherwise alienworld. We need to remember that autismhas a large dysfunctional sensory aspectwhich is often in conflict with the real,material world around the individual. Howthey understand and interact with theirsurroundings will be coloured substantiallyby sensory information—information thatdiffers from how the rest of us perceive ourenvironment.

Routine continues to be importantdespite the fact that we often try to reducethe rigid structures around the person inorder to facilitate more communityintegration. This is indeed a challenge—supporting an individual to move beyondtheir comfort zone to access and integrateinto the community while maintaining astructure in which they can feel in control.This conundrum is at the heart of thechallenge to care.

Another common difficulty in caring isthat of disrupted sleep patterns. Again, lowarousal, structured night-time routines cango a long way to addressing this. A lack ofsleep or a disturbed night may be at theroot of the challenges presented thefollowing day. This vicious circle needs tobe broken, and routine and structure areessential for this. A gradual slow-down inevening activities, followed by a shower orbath, and supper can help to facilitate sleep– but of course, this is not a panacea for allills and disturbed sleep patterns remain achallenge to us all.

Managing versus changingbehavioursI sometimes compare autistic behavior toan errant computer programmeme. There isa logic to it, once you can understand it.Every behavior or function has a logic toit—if we can spot it. This is the challenge.We need to find the logic between theaction or behaviour and the thoughtprocess of the person with autism. We haveheard much about cause and effect in theworld of behaviours that challenge, but

fully understanding this is easier said thandone. When attempting to changesomething, a lot of preparatory workneeds to be completed. New tasks have tobe broken down into smaller, moremanageable tasks (depending on theindividual, of course). Some may handlemultiple instructions and commands quitewell, while others need time to processeach piece of information. If we set out tochange a behaviour, we need to first ask: isthis change necessary? What will thebenefit be for the person with autism?Does the behaviour really need to bechanged or am I trying to make him/herlike me/us? Clarity about what we hope toachieve, and why, need to be addressedand communicated in whatever formpossible to those in our care.

Most individuals in a careenvironment will have several carers,maybe four, five or six. Althoughinevitable, this can be a cause forconfusion, and coping with different facesand personalities may be a stressor for theperson on the spectrum. No matter howdetailed and rigorous the establishedroutine, no two people carry out a taskidentically.

Communication difficultiesCommunication skills will often beextremely limited; functional speech mayor may not be present. In effect, thismeans the carer has to observe, interpretand even double-guess what the needs ofthe individual may be. But despite thedifficulty, communication does occur inone form or another and the challenge forthe carer is to learn how to communicateeffectively. There is a tendency (to whichwe are all guilty to some extent) ofassuming that if someone doesn’t speakthey either have no preference to expressor lack the intellectual capacity to do so. Ifa person is encouraged verbally tophysically show the carer what they want,and if they are given it, a large degree offrustration can be removed. Watchingsomeone’s eyes can be of immenseassistance: what are they looking at ortoward? Body language can tell us somuch if we read the signs. These are allchallenges to the carer or the family ofsomeone with autism who has limitedcommunication skills, but it is work whichdeserves more of our attention.

RelationshipBuilding relationships can also bechallenging, especially when it may seemto be only a one-sided relationship, or oneof unequal contributions. There is an old

adage in the area of spirituality thatsometime’s life is about being and notdoing. We may be sucked into the illusionthat it is only by doing things together thatwe form a bond or develop a relationship.Sometimes, just one’s silent physicalpresence is sufficient to foster arelationship. Just an awareness of the otherperson’s physical presence, without wordsbeing exchanged, may be sufficient to helpa person develop understanding andacceptance. In my own experience, a walktogether (in absolute silence) can have asmuch therapeutic effect as a host of otherinterventions.

Of course, we cannot assume this issufficient to resolve all our issues, but it ismore about our attitudes towards peoplethan about facilitating change. We willnever ‘remove’ or ‘cure’ the autism in aperson, which begs the question: ‘what dowe hope to achieve in the process of our caringinterventions?’We will never make them‘like us’ (nor should we). We will never getthem to behave as we would want them to(God forbid!). So what are our careinterventions designed to do? Keep themsafe, secure, clean, busy, in good health,nutritiously fed? All very good and worthyobjectives, to some extent. The realchallenge is to facilitate the potential forgrowth within each person. As ourreference at the beginning alluded to,acceptance of difference automaticallyreduces the problems we may perceive asneeding to change.

To conclude, I am aware that much ofwhat I have written may seem to beprescriptive, and in truth, no complete,one-fits-all system of care addresses all thechallenges to caring for people on theautistic spectrum, who also live with ID. Asalways, getting to know the individual as aunique person with abilities, preferencesand a personality all their own will go along way to reducing the difficultiesencountered. As has been said in themedia recently, we need to remember thatmany of those with whom we interact ona daily basis (at home, in work, college orschool) may well be on the spectrumthemselves. Caring for someone on thespectrum remains a challenge and thedifficulties encountered require patienceand creativity, but it is a challenge weshould relish and not fear. FL

Ciaran Leonard

ReferenceSinclair, J. 1992 (Personal Essay), in E.

Schopler and G. Mesibov, Highfunctioning individuals with autism. NewYork, Plenum Press.

A U T I S M


Autism Spectrum Disorder (ASD)is a neuro-developmentalcondition that is characterised

by impairments in social interaction,communication and repetitivebehaviours. The condition affectsalmost one in every 100 children. Overthe last few years there has been anincrease both in the early diagnosis ofASDs and in the range of effectiveinterventions available for children. InIreland, parents of young children areentitled to an assessment of theirchild’s needs, but their children haveno automatic entitlement to receivetherapeutic interventions. One of theconsequences of the ever-decreasinghealth and education budgets is thatresources are now being concentratedon the provision of statutory‘assessments of need’, and not oneffective interventions and supports.This is leading to increased frustrationon the part of both parents and serviceproviders.

This article looks at one child-centred, play-based intervention foryoung children with autism. The EarlyStart Denver Model (ESDM) wasdeveloped for toddlers as young as 12months. It is an adapted extension ofthe original Denver Model for

preschoolers with autism aged 24-36months, which combines thedevelopment of responsiverelationships with behaviouralteaching techniques. The Model aimsto reduce the severity of autismsymptoms and accelerate children’sprogress in all areas of development,but particularly cognitive, social-emotional and language developmentso as to enable children enjoy a betterquality of life.

FoundationsESDM brings together a number ofcomplementary approaches whichfocus on teaching skills that followtypical patterns of child development.Each of these approaches views autismas resulting from impediments ininfants’ early interpersonalexperiences, which creates barriers tosocial-communication development.

The original Denver Model viewsautism as resulting primarily from afailure in the area of social-communication development.Accordingly, intervention is focused oncare givers building close relationshipswith children using lively, dynamicinteractions. These interactions involvea strong positive affect to encourage

children to seek out others forinteraction during favourite activities.Rogers and Pennington’s ‘Model ofInterpersonal Development in Autism’posits that infants with autism areimpaired in their ability to imitate andattune with the feelings of others. Thiscreates barriers for the development ofan understanding of emotional sharingand intentional communication.Intervention in this model is directed ataddressing these critical impairments indevelopment, though fosteringemotionally rich relationships withresponsive, sensitive others who attuneto and coordinate with the child’semotional state. The ‘Social MotivationHypotheses of Autism’ holds that thereason people with autism spend lesstime attending to and interacting withothers is because of their lack ofsensitivity to social rewards early in life.This results in a failure on their part toattend to and engage with others,which (over time) leads to people withautism becoming more and moreremoved from the social world aroundthem. Interventions in this model areaimed at increasing the salience ofsocial rewards so as to enhance thechild’s social attention and motivationfor social interaction.

DEVELOPINGRELATIONSHIPSTHROUGH PLAY:The Early StartDenver Model forYoung Childrenwith Autism (ESDM)

Mitchell Fleming looks at onemodel of play-based interventionfor young children with autism.


A U T I S M

These approaches are combinedwith Pivotal Response Training (PRT)to form ESDM for teaching childrenwith autism. PRT is based on theprinciples of applied behaviouralanalysis (ABA) and was developed tooptimise children’s motivation tointeract with adults and engage inrepeated learning opportunities.

The ESDM curriculumESDM involves a developmental,broad-based curriculum that addressesthe areas of imitation, joint attention,social interaction, play, receptive andexpressive communication, cognition,self-care, and gross and fine motorskills. Each child is evaluated usingthe curriculum checklist. Based onthis assessment, individual learningobjectives are devised to focus on thechild’s and family preferences andinterests. Daily data sheets are used torecord progress. Initial objectives arereviewed and new ones set everytwelve weeks. If progress is slow, thetherapist uses the ESDM decision treeto enable him or her to makenecessary systematic changes to theteaching procedure.

The language interventionapproach used comes from thescience of communicationdevelopment, rather than frombehaviour analysis; it recognises thatverbal language develops fromnonverbal social-communicationbehaviours as well as speech sounds.People use verbal and nonverbalcommunication to coordinate theiractivities and to share their inner livesinvolving intentions, desires,interests, thoughts and feelings. TheESDM intervention provides multipleand varied communicativeopportunities and elicits manycommunicative behaviours, bothverbal and nonverbal, from the childduring each intervention session. Therange of communicative, or pragmaticfunctions, is carefully developed sothat a child not only requests anactivity, but also protests, greetsfamiliar adults, shares attention, andcomments or narrates during anactivity. Spontaneous communicationis carefully supported and the child’scommunications exert much controlover interactions and activities, whichshow the child the power ofcommunication and ensure thatcommunication is stronglyreinforced.

Complex developmental skills thatare usually impaired in youngsterswith autism, such as joint attention,imitation, language and symbolic play,are taught by embedding them inhighly preferred activities. These skillsare built up from the simplest steps tothe most complex, according to theirdevelopmental sequence. Complexskills, such as eye contact, are nottaught in isolation but are linked withother skills such as play and language,as this is what usually happens fortypically developing children.

Interdisciplinary teamThe ESDM is designed to beimplemented by a team ofprofessionals and family members.The team leader and parents are at thehub of the treatment team and theseare supported by other professionals,such as special educators,psychologists, SLTs, OTs, behaviouranalysts and physicians.

Teaching procedures Children’s objectives are taughtthrough play activities. During atypical session the child is given manyopportunities to acquire severalobjectives from differentdevelopmental areas. The ESDM usesteaching practices and proceduresmelded together from threeintervention traditions: ABA, PRT andthe Denver Model. Within ESDM,basic practices of effective teachingused from ABA include: functionalassessment, delivering teaching withinan antecedent-behaviour-consequencesequence, capturing the child’sattention, prompting, shaping,chaining, fading, and managingconsequences. Elements of PRTincluded are: child choice, turn taking,reinforcing attempts, using reinforcersthat have a direct natural relation withthe child’s response or behaviour, andinterspersing acquisition andmaintenance skills. The remainder ofthe teaching practices used come fromthe Denver Model. These focus on theaffective and relationship-basedaspects of the therapist’s work withthe child, the emphasis ondevelopment of play skills, and use ofcommunication interventionprinciples from the fields ofcommunication science.

When combined, the techniquesoutlined above are designed to engagethe child in positive emotional

experiences with another person, todraw the child’s attention to socialcues, to make such cues rewarding forthe child, and to foster the child’smotivation to continue such activities.Therapists use these techniques to elicitsocial and communicative behavioursfrom the child that are as close to thoseevident in typical development.

Evidence of effectivenessA number of papers have beenpublished in peer-reviewed journalsshowing the effectiveness of theoriginal Denver Model or ESDM as anintervention for children with autism.This article focuses on just one of thesepublications, owing to its exceptionalquality in the field of autismintervention research. GeraldineDawson, Sally Rogers and colleagues inthe US conducted a randomised,controlled study to investigate theeffectiveness of the ESDM as anintervention for toddlers with autism.Forty-eight children with an ASDbetween 18 and 30 months wererandomly assigned to one of twogroups: (1) an ESDM interventiongroup, or (2) commonly availablecommunity interventions (controlgroup). The ESDM received yearlyassessments, parent training, 15 hoursper week (on average) of the ESDMintervention from clinicians, and afurther 16 hours per week (on average)of ESDM intervention delivered byparents. In addition, children receivedwhatever community services theparents chose during the two years.The control group received yearlyassessments with interventionrecommendations and were referred forintervention to commonly availablecommunity providers in the region (i.e.greater Seattle, Washington). Childrenwere evaluated by experiencedexaminers prior to intervention, oneyear after the start of intervention, andagain after two years or at 48 monthsof age—whichever yielded a longertime frame. The examiners wereunaware of the intervention groupsthat the children had been assigned toand this helped prevent the possibilityof examiner bias influencing theresults. The ESDM detailedintervention manual and curriculumwere used with the ESDM interventiongroup. One or both parents wereprovided with parent training duringsemi-monthly meetings. Programmeintegrity checks were carried out to


ensure that clinicians implemented theESDM intervention with a high level(85% +) of fidelity. Results show thatthere was a significant differencebetween the two groups in IQ,adaptive behaviours (e.g.communication, daily living skills,socialisation and motor skills), andautism diagnosis following two-yearsof intervention. Two years afterstarting intervention, the ESDM groupshowed an average increase in IQ of17.6 points compared with 7 for theother group. Those in the ESDM groupshowed greatest progress in the areas ofexpressive and receptive language. TheESDM group made steady progress inthe area of adaptive behaviour over thecourse of the research, while thecontrol group displayed an 11.2 pointaverage decline in standard scores onthe Vineland Adaptive BehaviourScales. Children in the ESDM groupwere significantly likely to haveimproved diagnostic status followingtwo years of intervention, comparedwith those in the control group.

Similarities and differences withother interventionsThe ESDM most closely resemblesother popular autism interventionsapproaches that place a strongemphasis on responsive interactionsand developmental orientation. Theseinclude DIR/Floortime, RelationshipDevelopment Intervention/ RDI,SCERTS, Marte Meo and Hanen. All ofthese interventions are built onevidence about typical social-communicative development. TheESDM uses more clearly statedbehavioural techniques than the otherapproaches, it is more data driven, andit covers all developmental areas, whilemost of the other models focus onsocial-communicative development.

The ESDM has clear ties to thenaturalistic behavioural interventionslike PRT, incidental teaching andmilieu teaching, all of which also use achild-centred, natural language framedelivered using behavioural teachingstrategies. The ESDM differs from these,however, in the emphasis placed onaffect and quality of relationship.

Finally, the ESDM is similar to theLovaas/UCLA Young Autism Projectapproach, in so far as both have abroad-based curriculum, use intensivebehavioural approaches, and collectand use data to monitor progress andinform decision making. It differs fromthe Lovaas approach in the child-versus adult-centred teaching approachused, the focus on child positive affect,the focus on teaching communicationembedded in ongoing socialinteraction and on nonverbalcommunication as a precursor toverbal communication and in its use ofa curriculum based on developmentalscience.

There are no comparative studiesthat show that ESDM is better thanother effective approaches for childrenwith autism, so it is not possible toprovide information on whichapproach is ‘best’. However, it isunlikely that any one approach willsuit all children with autism. What isneeded are intervention approachesthat fit the family’s preferred way ofinteracting with children, a teacherand a therapist’s most successful way ofinteracting with others, and a child’sown profile.

Conclusion The main principles of the ESDM resultfrom a sophisticated combination ofevidence from studies of early autism,studies of typical infant and childdevelopment, and studies of learning.The ESDM fills a current need in thefield for a rigorous, evidenced-basedintervention that uses a developmentalrelationship-based, and data-basedapproach to address the manydevelopmental needs of youngchildren with ASD and the needs oftheir family. FL

References:Rogers, S. J. and Dawson, G. 2010. Early

Start Denver Model for young childrenwith autism. New York, NY:Guildford Press.

Dawson, G. Rogers, S. Munson,J.,Smith, M. Winter, J. Greenson etal. 2010. Randomized controlledtrial of an intervention for toddlerswith autism: The Early Start DenverModel. [Electronic version].Pediatrics, 125, 17-23.

The original Denver Model views autism as resulting primarily

from a failure in the area of social-communication

development. Accordingly, intervention is focused on care

givers building close relationships with children using lively,

dynamic interactions. These interactions involve a strong

positive affect to encourage children to seek out others for

interaction during favourite activities.

A U T I S M

Parenting is a tricky subject at thebest of times, with constant upsand downs. The toddler and

teenage years seem to be particularhighlights for testing of parenting skills!Stephen (who has a rare chromosomaldisorder and autism spectrum disorder -ASD) is the eldest of my three children,so I haven’t done parenting a teenagerbefore. There is no doubt that Stephen’sautism and intellectual disability addextra challenges, but sometimes I am sofixated on his disability that I forgetthat Stephen is growing up andexperiences many of the same things asa ‘normal’ teenager.

Sensory Processing DisorderOne the things that every parent ofchild with ASD needs to know is thatpuberty can set off new sensory triggers.Like Stephen, many children with ASDhave sensory processing disorder—Stephen’s senses do not ‘work together’the same as ours. He feels, sees, hears,tastes in a different way than we do.This also affects his movement andbalance. All areas of life are impactedfrom eating (only eats certain textures),to sleeping (he needs deep compressionhug to help relax him at bedtime), tohow he learns (he needs a quiet corner).He cannot ‘screen out’ noise like we doand gets overwhelmed in busy noisyenvironments. From what we see everyday, there is no doubt that certainnoises cause Stephen distress and, Ithink, some form of pain. Examples ofthis would be a baby crying, a dentist’sdrill, a hand dryer in a public toilet andmany more.

Since we became aware thatStephen’s senses are different than ours,it has helped us understand some of his

reactions. And we have tried to supporthim with preparation and avoidance ofcertain trigger noises. It had settleddown to a certain degree and he couldmanage many new environments well.However puberty and all thosehormones have sent poor Stephen’ssystem into sensory overload again.Things that we thought he had got usedto are suddenly causing him distress. Hehad been pretty good at getting hishaircut in the last few years and hadgotten used to the noise of the clippersand scissors. Suddenly it seems like thenoise is hurting him and he cannottolerate them near his head at all. Frommy experience, it seems sensoryprocessing disorder spikes duringtoddler and puberty/pre-puberty years.Stephen is 14 and I know I have a fewyears to go with teenage years, but I amlooking forward to (hoping) this sensorystuff settling down again in the future!

SleepStephen has never been a good sleeper,but recently he is waking at varioustimes during the night and early in themorning. From talking to other parents,and from what I have read, we are notalone (I know it does not fix it, but itreally helps to know others areexperiencing the same thing). It seemsmany young people with ASD find itdifficult to move smoothly through thecycle of ‘normal’ sleep. Needless to say,lack of quality sleep affects not justStephen, but the whole family.

I was chatting to one of myneighbours about sleep, or lack of it,when it struck me that I need to thinkabout what ‘normal’ teenagers do andthat all of Stephen’s behaviours are notnecessarily linked to his disability. My

neighbour was telling me about theamount of food her teenagers wereeating and it got me thinking thatmaybe Stephen’s waking up might bethat he is hungry.

Stephen has always been a ‘picky’eater and he does not like eating.Anyway I started giving him some extrasnacks during the day and it seems to behelping. The other thing I have used ismelatonin, which really seems to helpsettle his sleep pattern.

MeltdownsI was also telling my neighbour aboutStephen having complete meltdownsand that in many cases I could notunderstand what was upsetting him. Iwas busy analysing that it must beStephen’s frustration because he cannotexpress himself with words. This mayvery well be a cause, but my neighbourreassured me that many ‘normal’teenagers also have meltdowns overwhat seems like nothing.

LessonsI am learning that, yes, having a teenagechild with ASD does pose lots ofchallenges, but so does having anyteenager. Stephen is teaching me aboutpatience, understanding and activelistening. Stephen has a great sense ofhumour and he also reminds me of theimportance of laughing and keepingthings in perspective.

On the positive side of puberty, Ihave to share with you that Stephen hasacquired more language from age 12 to13 than at any other stage of his life! FL

PARENTING A TEENAGERWITH AUTISM—what Stephen is teaching me!

Avril Webster describes how she islearning to cope with the challenges ofpuberty in tandem with her son Stephen.



HERE WEGO AGAINLimited resources are new to many who came through theCeltic Tiger years, says Rita Honan. But those of us withgrey around the temples recall not only lack of funding, butmore damaging, lack of knowledge of how best to teachand support those with an ASD. Actually, few professionalsin Ireland even knew how to recognise or diagnosis Autismand Asperger Syndrome a short 15 years ago! The numbersof special classes for students with Autism were in thesingle digits, there were 8 students per class with no SNAs,none of the classes were in mainstream schools and noneof the children were in mainstream classes. So, lots ofprogress has been made, but now, how do we cope inthese lean-again times? History is a good teacher—of whatto do, and what not to do. Let’s learn from it to minimisethe inevitable damage that will be done by the restrictionsbeing placed on necessary resources.

In the earlier days little was known aboutthe autistic conditions themselves, andvery few parents and professionals knew

much about evidence-based practices. Not agood idea. Philosophy, theory—not a lot ofeither was about. Both exploded in Irelandpre-and post-turn of the century (rememberthe Millennium???). Regardless of thecurrent economics, we still have thesecritical ‘resources’.

Philosophy—Know the condition and howit is affecting the individual; provideintensive early intervention from time ofdiagnosis; follow person-centred planningvalues; think age-appropriate, naturalsettings, and community-based; focus onfunctional life and social skills; do not placea ceiling on expectations.

Theory—Understand the function ofbehaviours before intervening; teachthrough behaviour analytic strategies pairedwith visual organisation supports; teachpivotal skills; identify and use motivators;include choice options; base curriculum onindividualised assessment outcomes.

Regardless of the level of funding, we canincorporate these to some extent into theeducational and support plans for childrenand adults on the autism spectrum. Focus onthe most critical elements when identifyinggoals—those that (when learned) willgeneralise to other areas, fostering on-goingprogress. Not only at the start, but all theway through to university, insure good basiclearning habits are acquired and followedand work towards reducing identifiedbarriers to learning and self-sufficiency.Make learning sufficiently challenging,rewarding and fun!

The real worldSo, back to the real world. How do you dothese things without skilled manpower:teachers with specialised training andmaterials, speech and occupationaltherapists, psychologists, behaviour analysts,tutors, SNAs? You prioritise, you read andlearn, finding the most relevantinstructional directions for the mostimportant aspects of the curriculum. Ifyou’re a parent, you speak with otherparents, you advocate as much as you canfor your child on the local level (School,SENOs, ASD or CAMHS team), and at anational level (DES, HSE, Ministers, TDs).You’ve been doing this anyway. Unless youwere lucky, you’ve already been faced withclinical positions being left unfilled (in somecases for years), and with some goodteachers with good will but little backgroundin this specialism. What’s new is that the


funding not only to maintain the levelof service delivery that existed ismarkedly reduced, but that thelikelihood of future developments ismarkedly diminished. Scary stuff.Materials and manpower, keeping upwith international findings and bestpractices are out of reach. This is theprice to be paid for the economic folliesof others.

Improved practicesThe push for improved practices andservices should come from within thesystem and professionals should neverbe satisfied with what they have beenoffering, always striving to improve.Progress in disabilities in all Englishspeaking countries and probablythroughout the world, however, hasalways come from parents. Pity, asparents are already under a great deal ofstress. Society should be making it easier,not harder, to parent a child with adisability or to be a person with an ASD.What you can do is to get the availableprofessionals to stand with you; tosupport you in your efforts to get yourpiece of what’s left of the pie. Form ateam around your child as best you can,understanding that the availability ofmembers will wax and wane. Thatdoesn’t have to be a bad thing if you’reable to draw on everyone’s strengthwhen they are on board. Of course, notevery parent has the emotional orphysical energy or the time to do thesethings. No parent should be in theposition to need to do so, but that’swhere we are. Get other family membersand friends to lend a hand, make callsfor you, implement interventions fromtime to time, etc.

Using scarce personal resourcesThe role of philosophy and theorybecomes more critical in these leancurrent times and both point us toevidence-based practices. This is not atime to try new things or to advocate forapproaches that have not been provento be effective. We need the best bangfor the disappearing buck. Parents inIreland have spent thousands of euro onsome ‘interventions’ for their child thathave no scientific support whatsoever.

Anecdotal reports are not ‘evidence’.Results of well-designed andprofessionally peer-reviewed studies are.Check the facts. Ask for references in thepublished, peer-reviewed literature forwhat anyone recommends for yourchild. I recall once asking this of a well-advertised Institute for Light Therapy,and when I never heard back from them,that told me what to think of this highlyacclaimed (by themselves onlyapparently) ‘intervention’. If you have abit of money to spend, get someonequalified, a Board Certified BehaviourAnalyst or equivalent, to workcollaboratively with teachers andfamilies to develop personalised,evidence-based teaching strategies for allinvolved to follow. Focus on what’s mostimportant and limit the number of goalsat any one time to allow for an intensefocus. As one goal is met, add anotherand keep moving on.

Other countriesFlorida, where I spend most of mywinters now that I’m closing in on thefree travel pass, has an interesting systemwhere that State actually allots a setamount of money to a person with adisability based on their stated needs.The individual and/or family then getsto decide how to spend it! Who to hire,what to focus on, etc. Evidence must begiven to the State from providers they

engage with that what they’re doing hasvalidity for that client and they must alsosubmit ‘progress’ reports to secure on-going funding. This reduces thelikelihood of financial waste onunsuccessful approaches or services thatthose with an ASD or their parents findaren’t helpful. This system has itsdrawbacks, of course—as anygovernment programme does—but it’ssomething to consider and possiblyadvocate for to make the best use of thelimited funding being imposed on you.

Self-careSo, it’s tough times, but times are alwaystough for those affected by an ASD,whether you have one, are the parent ofsomeone with one, or work with folks onthe Spectrum. So, put some self-carestrategies in place for yourselves. Youneed it. You deserve it. You are the bestbet for the future success of these kidsand young adults. Two steps forward,one step back. The bankers and somegovernment officials have put you in theback step right now. Don’t let them keepyou there. Eyes forward, heads up, andkeep the pressure on them to do theright thing and support everyone in needon the Autism Spectrum. FL

Dr. Rita Honan is a Registered Educationaland Counselling Psychologist and BoardCertified Behaviour Analyst in PrivatePractice in Dublin, focusing on the diagnosisand support of those with an ASD. She alsoteaches on numerous postgraduate courses inthe School of Psychology, Trinity College. Sheis trying to retire to her apartment in Florida,but loves her work and Ireland too much forthat to happen any time soon.

A U T I S MThis 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

of euro on some ‘interventions’ for their child that have no scientific

support whatsoever. Anecdotal reports are not ‘evidence’.

I am selfish and impatient and a little insecure

I make mistakes and I am out of control

And at times hard to handle

But if you can't handle me at my worst

Then you don't deserve me at my bestMarilyn Monroe


Many years ago, when I was 15,the same age my autistic son isnow, I saw an amazing movie

which, without my realising it, shapedforever my way of thinking. The film wascalled Gandhi. It was directed by RichardAttenborough with Ben Kingsley starringas Mohandas Karamchand Gandhi. Ittook me years to realise how deep andwise were the thoughts and reflections ofthis incredible film.

‘You must be the change you wantto see in the world’, Gandhi once said.Nothing was going right for me as amother of an autistic child until myfriends and I—parents of autisticchildren—until I truly understood themeaning of that statement.

Back in 2003 there were services forspecial people in Bulgaria, but childrenand adolescents within the autisticspectrum were left behind because oftheir hyperactivity, challenging behaviourand difficult communication and all thatcan present for people diagnosed with anAutistic Spectrum Disorder. Parents whosechildren were low functioning, and alsothose with hyperactivity, could onlyaccess an hour or two a week for theirchildren at special social rehabilitationand integration centres. We neededservices and we needed them very soon.

I began meeting more parents whosechildren were autistic and we decided toform an Association. It was May 2003when the Association Autism was formed.Its mission was to enhance the quality oflife of individuals and their familiestouched by autism spectrum disorders.Our main objective as a parent NGO wasto promote the civil rights of childrenand adults with autism in Bulgaria and tohelp them overcome their social isolationand live successfully in the community.

The Association’s first task was tocreate a community awareness of AutisticSpectrum Disorders within Bulgariansociety by disseminating informationamong parents and professionals aboutavailable evidence-basedinterventions. The second Task was toopen specialised centres for autisticchildren and adults which wouldwelcome people with autism, no matterhow serious their condition is. Wedreamed about having a place we can

bring our kids without the need toapologise for who they are, what they door not do—a place where we could shareour fears and doubts. Nobody teaches usto become parents—especially how toparent autistic children. So we werelooking forward to the opportunity tocreate a place which would provide theservices needed for children, adolescentsand adults; training for parents, caregivers, siblings; help for single motherswho had a child with ASD; andinformation for treatments, diets, healthyliving etc.

�‘First they ignore you, then theylaugh at you, then they fight you, thenyou win.’ —another famous phrase ofMahatma Gandi which for me symbolisesthe process of searching for a place inSofia suitable for autistic people. It tookmore than three years to justify the needfor this kind of service, to prove that evenin a period of tough reforms andeconomic difficulties we still needed todo everything possible to ensure peoplewith disabilities could live their lives withdecency, dignity and respect. It was noteasy to explain that autism is not alifetime sentence and that effort investedin the children would make them less ofa social burden in the future. We foundpeople who shared the same vision withus. What appeared an impossible missionbecame a reality. We found sponsors,people who trusted us and raised themoney to rebuild the facility given by themunicipality.

In March 2007, with the kind supportof our sponsors, Association Autismestablished the first Bulgarian Centre ofSocial Rehabilitation and Integration ofpeople within Autistic SpectrumDisorders. This became the firstspecialised centre in the country whichoffers autistic people extensiveopportunities for learning throughphysical, occupational, speech, art, music,dance and equestrian therapies. All thespecially tailored individual programmesare designed to incorporate thedevelopment of communication, self-help, independent and social andrecreational skill of children andadolescents. The motto chosen by thestaff members of the centre is a quotefrom Mother Teresa of Calcutta: ‘We can

do no great things; only small things,but with great love.’ Now, five yearslater, I can still feel it’s not only a wisemessage but it is a state of mind and ascale of devotion.

In order to make the services in thecentre free of charge we gifted the centreto the municipality. It is now owned bythe government, but all the specialactivities, like horse riding, summer andwinter camps, weekly outings andcommunity gatherings are only possiblebecause of the financial support ofAssociation Autism. Sponsors continue tosupport the parent association, enablingthe development of more services forchildren and adults with autism.Sponsorship has enabled the Associationto provide training and seminars tohundreds of parents and professionalsthroughout the country. At the same timeour professionals were assisted to take partin different autism-related events whichenhanced our knowledge of the mostpromising autistic approaches andinterventions. The financial support fromour friends and sponsors has made itpossible to provide the best environmentfor the children so they can enjoy theequipment in the sensory room, benefitthrough computer learning and acquireskills during the individual and groupsessions in the specially designed therapyrooms.

The motivated staff team reward eachstep of accomplishments of the student,no matter how small they may be. Thanksto their efforts, some children havesuccessfully joined mainstreamkindergartens and schools. We share inthe accomplishments of the children, forexample, their first sounds, and their firstwords. Thanks to the Irish organisations

GETTING STARTEDMirena Vladimirova tells how a film she saw as a teenagerhas influenced and helped her as she fought for services forher autistic son in her hometown of Sofia, Bulgaria.


represented in Bulgaria by Mr JohnO’Gorman, we were able to equip theCentre with an outside playgroundwhich helped our children to learn whileplaying. We were also able to visitdifferent centres and schools in Irelandproviding services to autistic childrenand adults. These visits were stronglymotivational. A team of Irishprofessionals also took part in trainingpsychologists, special teachers andspeech therapists working with peoplewith ASD in Bulgaria. The sharing ofknowledge and experience is still highlyappreciated among different specialists.

For three consecutive years, startingin 2009, we have implemented threespecial projects for adults with autismcalled ‘Learning for life’. The differentparts of the projects included: social skillsworkshops, logical thinking workshop,arts & crafts workshop and puzzles. Eachyear the project was joined by newunemployed autistic adults who were notin receipt any service or specialisedtreatment support.

In August 2011 the Centre wasenlarged with a new additional facilityproviding special support to 20 adultswith autism. The clients are able to enjoytheir new cooking and fitness classesthere, as well as computer, social skillsactivities, arts and crafts workshops.

The efforts to develop differentworkshops or events for adults withautism made by the Association Autismlogically led to a European project, withregard to the recruitment of peoplewithin the autistic spectrum into the IT

sector. The European Software InstituteCentre Eastern Europe (ESI CEE), incollaboration with Association Autism,developed a project ‘Development andPiloting a Model for OccupationalTraining and Employment of peoplewith ASD in the ICT Sector’. Theinitiative expresses the willingness of ITcompanies ( members of BASSCOM, theBulgarian Association of SoftwareCompanies) to provide employment forpersons with autism in the IT sector. Theproject is co-funded by the EC.

Young persons with autism andpotential employers were trained how towork together in the real businessenvironment. After completion of thetraining, the youths have been providedwith employment in Bulgarian ICTintensive companies. The workshopsalso included training for the employerson how to work with persons withautism, both theoretical and practical ITtraining for persons with ASD. Allpersons with autism and experts dealingwith the integration and rehabilitationof people with ASD received certificationin computer literacy.

The project provides people withautism the opportunity to move awayfrom the care-home environmentduring the day to a professional andpersonal development environment inthe IT sector. The companies hiringpersons with autism expect positivechanges in their employees’ perceptionof ASD, through pro-activity in thecommunity interaction to pro-activity inorganisation goals achievement.

The project is now coming to the end.Eight IT companies provided IT jobopportunities including apps forfunctional testing, content managementsystems, digitalisation and processing ofdocuments, database filling, andcompany social activities. Our hope afterthe pilot project ends is that some of theadults will be able to sign official longterm contracts with the companies.

‘The difference between what we doand what we are capable of doingwould suffice to solve most of theworld’s problems.’ Association Autism isa small organisation, part of the BulgarianAssociation of People with IntellectualDisabilities (BAPID). We keep ondreaming for the future of our children.We try to be the change and make thedifference. We move the things forward.There will always be more to be done, butthe efforts and the time devoted areworth every single second of it.

Recently I travelled to India, to theland of the extraordinary Gandhi. Ivisited a special school in Pondicherry. Imet devoted parents and creativeprofessionals working hand-in-handfacing similar problems and challenges asall of us do. In my eyes they wereovertaking hundreds of obstacles eachday. I visit many countries to learn whatthey do with regards to autism. The mostimpressive experience for me is that all ofus parents of special children, no matterwhere we are (Bulgaria, Ireland or India)—we share the same dreams and fight thesame fights for the rights of the peoplewith disabilities and their families. As allof us parents and professionals share thedifficulties of raising and teaching thepeople with autism, we also want tocelebrate together each day their uniqueworld of existence, their different ways ofthinking, talents and skills. By creatingautism awareness among people in ourcountries and assuring the quality of theservices available for the individuals withautism, we can be sure that they will besurrounded with more understanding,love and support throughout society. FL

Mirena Vladimirova graduated from aRussian language school and later studiedliterature for two years in Bulgarian andRussian Universities. Mirena later went on tostudy Chinese Language and Literature inBeijing University. Her post graduate studiesalso included an MBA, following which sheworked for ten years in Beijing. She has beenactive in developing autistic specific servicesin Bulgaria and has been the chairwoman ofAssociation Autism since 2003.

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From early childhood John didn’tspeak, he was obsessed withspinning objects and he preferred

to spend time alone away from otherpeople. John has autism, and his storyis not an unusual one in the context ofadult disability services in Ireland.Difficult behaviours described in earlychildhood and adolescence exacted aheavy toll on John’s family life, andwell-intentioned disability servicesguided decisions for him to move awayfrom his family home and intoinstitutional care. Unfortunately, 30years ago autism spectrum disorders(ASD) were almost unheard of inIreland, and people like John werelargely misunderstood. Life in a largecongregate setting for the next 30 yearsonly served to validate his identify assomeone who was severely challenging.Responses to his distress were oftenpaternalistic and usually consisted ofnegative consequences, including:limited access to the things he enjoyed,limited opportunities and choices,restrictive practices, and high rates ofanti-psychotic medications.

In the past decade there have beenreports of a dramatic increase in theprevalence of ASD from .25 cases in1000 (DSM IV, 1994) to 1 in 110 people(CDC, 2009), with the rate increasingby 10-17% per year. More childrenbeing diagnosed with autism can bepartly attributed to a broader concept ofASD, and to better identification andunderstanding of autism. Thoughprevalence rates are somewhatcontroversial, it is generally acceptedthat more people with ASD will beentering adulthood, and that there willbe increased demand for appropriatesupports and services. This presents asignificant challenge to services, andrequires greater attention to the specificneeds of adults with autism if we are toplan and provide for effective supportsand services. The quality of their liveswill be determined by how we, as acommunity, understand and respond tothem not just as people, but as peoplewith an Autistic Spectrum Disorder.

We have learned from first-handaccounts of people like Temple Grandin

and Donna Williams and a growingnumber of online blogs from people onthe spectrum, how people with ASDmight experience the world differently tous ‘neuro-typicals.’ Autism can beconsidered as a different way of being.Autism is referred to as a spectrumdisorder to signify a diverse group ofpeople who share the same corecharacteristics. People with ASD havedifficulties with social communication,flexibility in thinking and behaviour aswell as sensory processing difficulties.Approximately 75% of individuals withautism also have a learning disability. Thediversity of those on the spectrum iscaptured well by Stephen Shore’s famousquote: ‘If you meet one person withautism, you’ve met one person withautism.’

Many people will experiencechallenging behaviours while living withor supporting individuals with autism.Challenging behaviours can refer to self-injurious behaviour (such as headbanging, biting), behaviours directedtowards others (such as hitting out,kicking etc), property damage (e.g.breaking furniture) or restricted andobsessive interests (e.g. fixing or collectingobjects) that impact on ordinarycommunity living. People with autism aremore at risk for a variety of challengingbehaviours and can experience the fullrange of mental health disorders. Theemotional and physical impact on thepeople supporting an individual withchallenging behaviour can be enormous.Outcomes for the individual can include:serial crises, placement breakdowns,admission to specialist units, and use ofhigh levels of psychotropic medicationsto manage behaviours. However, theseconsequences can be managed andreduced if we develop a greater level of

understanding of the unique perspectivesthat accompany autism.

There may be many reasons why thereis a link between autism and challengingbehaviours. There is a strong associationof stress and anxiety across all ages ofpeople with a diagnosis of autism (Davis etal 2011). Indeed many of the behavioursassociated with autism may be expressionsof anxiety: repetitive, ritualisticbehaviours, strong desire for routine,obsessive interests, hoarding, lining itemsup, sleep problems, gastro-intestinalproblems, eating problems, avoidance,self- isolation, self- stimulatory behavioursetc. Autism is associated with levels ofanxiety similar to that of people with adiagnosis of clinical anxiety.Understanding fear, anxiety and stress canhelp us understand why someone mightengage in challenging behaviours. Manypeople with autism have difficultiesinterpreting their emotions, and mayexpress and respond to their emotionsdisproportionately. Resultant challengingbehaviours can be explained as panic orstress reactions.

We know that people with autism alsoexperience the physical world differentlythan others do. Many people with autismhave unusual responses to sensory stimuli;first-hand accounts of people on theautistic spectrum describe hypersensitivityto certain sounds, touch, smells, tastes ormovements. Particular fascinations oraversions to certain sensory stimuli in theenvironment may explain some of themore ‘bizarre’ behaviours associated withautism, such as resistance to eating certainfoods, extreme reactions to backgroundnoise, or fascination with movement.Some people with autism may find itdifficult to process sensory informationfrom more than one channel at a time—for example, they may be able to either

Living and working with people with autistic disorders is not like livingand working with anyone else with or without disabilities. Pastexperiences of social interaction and a desire to help are not sufficientguides. It is essential to understand the nature of autistic conditions.People with these disorders, because of their social impairmentscannot meet you half way. You have to make an imaginative leap intotheir world and try and see things from their point of view.

(Lorna Wing, 1995)

Supporting community living for adultswith Autism Spectrum Disorders (ASD)and Developmental Disabilities (DD)


‘look’ or ‘listen’, but not both together. Wealso know that certain types ofenvironments may be a source of stress forindividuals with autism. There is evidencethat sensory hypersensitivity is associatedwith higher levels of anxiety (Baker et al2007), and a heightened perception ofvisual sensory input in the environmentcan be exhausting:

Trips to the supermarket are always achore. There’s too much mentalstimulus. I have to look at every shapeand texture. Every price and everyarrangement of fruit and vegetables.…I’m just really uncomfortable

(Daniel Tammet).

Part of the social communicationdifficulties that occur with autism includedifficulties interpreting other people’sbehaviours and intentions. Havingdifficulties inferring meaning from socialcues can make social situations terrifying.If you can’t properly judge how anotherperson is feeling, or understand how theymight behave, then this makes otherpeople constantly confusing andunpredictable. Temple Grandin, writing ofher experiences as a person with autism,likened trying to understand the socialworld as comparable to being ananthropologist on Mars. Difficultiesprocessing language, including delays inbeing able to process what others aresaying can further contribute to thisconfusion and anxiety. Consequently,difficulties developing relationships canthen lead to loneliness and isolation,further diminishing a person’s ability tocope with stress.

Simon Baron-Cohen describes howpeople on the spectrum have a strong driveto systemise, to find patterns or rules in thesocial and physical environment. Thisextreme need for sameness may be a wayfor people with autism to make sense ofthe world. It is common for people withautism to make strong associationsbetween things; people become associatedwith specific places or activities;conversations are scripted; objects stay incertain locations etc. Identifying rules andpatterns allows you to predict what isgoing to happen or how people mightbehave. Change or variation from theserules or patterns can be stressful, and mayresult in high levels of anxiety. Forsomeone who finds the social worldpuzzling, this need to organise, classify andimpose structure might be greater; possiblyas a way of regaining some of the sense ofcontrol and predictability which is missingfrom their interactions with others.

Supporting individuals withAutism/DD in community settingsOur job is not to fix people but to designeffective environments. (Rob Horner)

All people with developmentaldisabilities, including those with autismand challenging behaviours, must berecognised and treated as equal citizens,have equal access to services, and besupported to live in a manner that bestmeets their needs. This involves getting toknow the person, their unique qualities,building on their strengths and providingopportunities and choices that help eachperson lead a fulfilling life.

In the last number of years we havehad the opportunity to support familiesand staff working with adults withASD/DD transition from unsuitablecongregate settings into individualisedcommunity homes. This was anopportunity to set up individualisedwraparound services that catered for theunique needs of each individual. Most ofthese transitions involved either singleoccupancy homes or small group homes,and outreach individualisedemployment/day programs instead ofcentre-based day services. The aim hasbeen to set up person-centredindividualised services, to reduceindividuals stress and their challengingbehaviours, and fundamentally toimprove their quality of life. Thesubsequent benefits have been significantreductions in challenging behaviours andstress, improvements in health, reductionin psychotropic medications, improvedfamily contact and relationships, moreopportunities and choices, positiveinteractions with carers—and thesubsequent development of positiveperceptions of individuals beyond thelabel of challenging behaviours.

A substantial evidence base in PositiveBehavioural Supports (PBS) emerged inthe 1980s, demonstrating effectivestrategies for people with challengingbehaviours. Rather than seeingchallenging behaviour as a trait specific tothe person, functional assessment, thecornerstone of PBS, addressed thequestion ‘What is the person trying tocommunicate?’ This approach recognisedthat without understanding the functionor role that behaviours play incommunicating the person’s needs,supports are unlikely to be effective. Afunctional assessment analyses thecomplex interplay between behaviours,possible underlying medical and organicfactors, psychological and mental health

factors, communication and socialenvironmental factors. The purpose of adetailed comprehensive functionalassessment is to understand the factorscausing the person’s distress.Challenging behaviours always happenfor a reason and are usually signs thatthe person is stressed and not coping intheir environment.

It was clear from his behaviours thatJohn was unhappy in his service. Helived in a crowded, noisy environmentand attended another loud, crowdedgroup service during the day. There werehigh rates of severe challengingbehaviours at busy meal times, whenthings didn’t happen on time, whenothers around him were stressed, whenpeople didn’t respond to his requests,when activities were cancelled and staffrosters changed. John wanted peace andquiet, help when he needed it, more ofthe activities he enjoyed, and more timewith the people with whom he had builtrelationships. Therefore, rather thanfocusing on fixing problem behaviours,positive behaviour supports focused onthe need for the people around him andfor the physical environment to changeto meet John’s needs.

Recommendations to support Johnincluded rescheduling to avoid problemcontexts, finding out what made lifeworth living for John and giving himmore of this, helping him cope with thesensations his emotions caused andunderstand why he felt that way andteaching him alternative ways tocommunicate his needs. These strategieswere designed to reduce stress andreplace or make the need for challengingbehaviours obsolete. But changingexisting supports can be particularlydifficult in the context of autism and inthe context of large institutional settings.John had rules and patterns that werestrongly engrained in the existingcontext of his living environment.Moreover, what John really needed was abetter life. To reduce his stress andimprove his quality of life he needed anindividualised service that embraced anautistic viewpoint particular to him.

The philosophy of inclusion andcommunity participation are acceptedambitions for individuals withdevelopmental disabilities. However,community settings are often the verysettings in which people with autismfind it difficult to cope. John’s advocatesproposed that change was only possibleif he could live in his own home, in thecommunity. But there were plenty of

A U T I S M


excuses why it wouldn’t work: whatwould happen if he hurt a member of thepublic, what if staff couldn’t copeworking alone, what if he became upsetin the car, what if...Some of the concernsfrom family and staff were paternalistic,but others were real. The challenges andcomplex needs sometimes associated withautism/DD can make the reality ofinclusion and community participationdifficult to realise. Thankfully John’sadvocates were resolute—but making itwork would involve some essentialingredients:

1) A shared vision and an ongoingprocess of training and support A lack of understanding of autism canlead to a variety of problems, includingthe use of inappropriate supports. Thewrong supports may lead to everincreasing levels of stress and canultimately end in crisis situations. Becauseworking with people with autism is sodifferent from working with others with adisability, Autism Awareness training isessential. This training should give carersa better understanding of what the worldfeels like from the perspective of autism.In addition to generic training thereshould be a focus on the idiosyncraticneeds of the person in the context oftheir autism. PBS is less about addressingbehaviours that challenge per se, andmore a process of building a vision forwhat a good life would be for the person.All of the key stakeholders in John’s lifehad a shared vision of what a good life forJohn might look like: what made lifeworth living, what kind of relationshipsworked for John, what didn’t work forJohn. Another goal of PBS is improvingcoping skills for the individual and thepeople who support them. People’sperceptions of the causes of challengingbehaviours and the impact of using poorbehaviour management skills are linkedto burnout (Hastings and Brown 2002,Mitchell and Hastings 2002), while self-efficacy or the belief that we have theskills and abilities to manage is linked tobetter coping skills. On-going trainingand staff and family supports can have apositive impact on a carer’s perception ofeffectiveness and therefore self-efficacy.

2) A consultation model that viewsfamilies and staff as the agents ofchange Challenging behaviours occur in real lifesettings, and so interventions need tofocus on building supports in thesenatural settings. For effective and

enduring positive outcomes it is criticalthe people who already live with andsupport the individual understand anddeliver these supports. Clinicalbehavioural interventions have a strongevidence base, but can be technicallycomplex, sometimes counterintuitive andoften inaccessible to families and carers.In order to be effective therefore, clinicalinputs are challenged with translatingthese strategies so that they can bedelivered by an individual’s naturalsupports in ordinary community settings.

Training staff and families toimplement support plans has shownenduring behavioural improvements(McClean et al. 2009). Ongoingcollaboration with all stakeholders toreview and revise strategies, with anemphasis on evidence based practice, canhelp maintain supports and preventcrises.

3) Flexible funding and a range offlexible supports and servicesLarge institutional settings are associatedwith less choice, less communityparticipation, and a poorer quality of life.A new appreciation for individualisedfunding within disability services will de-centralise services and enable thedevelopment of tailored individualisedsupports. Single-occupancy homes havethe advantage over group homes as theperson can exert more control over theirenvironment and exercise more choice.This option is essential for individualswith autism who may experience highlevels of stress when living with otherpeople. Changing to more flexible staffsupport arrangements on an as-neededbasis opens up opportunities for moreefficient and targeted services.

John moved to his community homenear his family after thirty years living in alarge institution. He had strong advocateswho believed in his strengths and abilitiesand were willing to see the world from hisperspective. At first the move was not plainsailing; the changes to his routine weredifficult for John but his support staff weredetermined. Gradually intensive supportswere phased out, behavioural incidentsreduced and risks were no longer worriedabout. Life still throws him curve balls:staff changes when familiar staff are sick,bad weather means sometimes activitiesget cancelled, crowded, noisy places in thecommunity still cause him stress. But nowJohn has more control over his life, he haspositive relationships with the peoplearound him, he chooses where he wants togo and what he wants to do. He knowswho is supporting him each day, his houseis calm and quiet. And for all this, Johnalso has more money, because living in hisown home costs less than living in a largeinstitutional setting. FL

Nessa Hughes,Muiríosa Foundation

ReferencesBaker, J. K., Fenning, R. M., Crnic, K. A.,

Baker, B. L. and Blacher, J. 2007Prediction of social skills in 6-year-oldchildren with and withoutdevelopmental delays: Contributions ofearly regulation and maternalscaffolding, American Journal on MentalRetardation 112, 375-91.

Davis, T.E., Moree, B.N., Dempsey, T.,Reuther, E.T., Fodstad, J.C., Jess, J.A.,Jenkins, W.S. and Matson, J.L. 2011The relationship between autismspectrum disorders and anxiety: Themoderating effect of communication,Research in Autism Spectrum Disorders 5(1), 324-29.

Hastings, R. P. and Brown, T. 2002Behaviour problems of children withautism: Parental self-efficacy, andmental health, American Journal onMental Retardation 107 (3), 222-32.

McClean, B, Dench, C., Grey, I., Shanahan,S., Fitzsimons, E., Hendler, J. andCorrigan, M. 2005 Person focusedtraining: A model for deliveringpositive behavioural supports to peoplewith challenging behaviours, Journal ofIntellectual Disability Research 49, 5.

Mitchell, G. and Hastings, R. P. 2001Coping, burnout, and emotion in staffworking in community services forpeople with challenging behaviours,American Journal on Mental Retardation106, 448-59.

There may be manyreasons why there is alink between autism

and challengingbehaviours. There is astrong association ofstress and anxietyacross all ages of

people with adiagnosis of autism.

A U T I S M


OUR JOURNEYMaria Moran tells the story of her daughterJessica’s diagnosis on the autism spectrum and thewhole familys’ journey as they tried to find theirway through a maze of treatments and opinionsfor the best method to help and care for her.

On a Tuesday morning, 31 August1999, an incredible journeybegan for me, my husband and

family. Jessica Elizabeth was born in theRotunda Hospital, Dublin, overdue by acouple of weeks. After an arduous anddifficult birth, I held my precious bundlein my arms. She was so beautiful—theyoungest of five daughters. I felt all mydreams and aspirations had come tofruition.

Jessica developed normally andreached all her developmental goals, untilabout thirteen months. She seemed tohave a clumsy walk and did not interactwell with others. We went to TempleStreet Hospital and had a series of testsdone, which showed up as inconclusive.

In August 2002, still not happy withJessica’s development, I contacted theMater Hospital’s Child Guidance Clinic inBallymun, where in November 2002, wefinally got the devastating news thatJessica was on the autistic spectrum. Wewere not prepared for the diagnosis; wedid not know which way to turn. Thepsychiatrist who gave us the diagnosisadvised us not to buy into all the hypethat surrounded cures for ‘autism’.Unfortunately we did not take his advice,and went everywhere and to anyone tofind help in obtaining a cure. We lookedinto the Sunrise Programmeme, ABA(Analytical Behavioural Analysis), specialdiets, potions and oils. We bought into itall.

An advisor for the Sunrise Programmetold me that I was giving up on mydaughter when I decided not to part withthe €20,000 needed to attend theprogramme in America. When we heardabout ABA, we went to a lecture in NUIMaynooth to learn more about it. I calledthe number we were given in the lectureand added Jessica’s name to a waiting listat an ABA school.

On 23 March 2003, Jessica began herformal education. She joined a newlyopened pre-school for children withautism in St Helen’s National School inPortmarnock, where she was happy andmade great progress. We also availed ofhome tuition from a separate source fortwenty hours a week. We then went aboutfinding home tutors.

Along the way we met a lot of peoplewho were, in my opinion, incompetent.Most of these ‘so-called’ tutors were notproperly trained and were, I felt, only in itfor what money they could make out of it.I expressed my concerns to theDepartment of Education. The Departmenthas reformed the criteria for home tutors.They must now be qualified teachers witha school roll number and have appropriateexperience with children with autism.

Eventually, through trial and error, wecame across some good tutors. One, inparticular, stood out—a primary teacherwith experience in special educationalneeds. Jessica went from strength tostrength.

Jessica had been on a waiting list forseveral years for an ABA school. When weheard that she could finally start at thisparticular school, we were delighted.Jessica spent several years there, sometimesmaking progress and sometimes regressingagain.

In 2008 Jessica got very upset andviolent and would have a ‘meltdown’ forno apparent reason. I spoke to the directorof the school about this. In my opinioncertain programmes were put into placethat had a devastating effect on Jess. Shewas placed in a class with children whohad violent behaviours and, in my view,inappropriate methods were used tocontrol Jessica’s outbursts. I asked that shebe removed from the class and that themethods would be discontinued. On theadvice of a psychologist attached toanother service, Jessica was placed in aroom on her own and progressed again.After a couple of months she rejoined herclassmates and did very well.

Jessica made her first Holy Communionin May 2009; she was very happy andcontent in herself. She even did a readingon her Communion day. We wereoverjoyed.

Jessica began early adolescence at tenyears of age in October 2009. Again she gotupset and violent and the meltdowns beganonce more. She began stripping and hertoilet training regressed. She was put in aroom on her own again, where she trashedthe classroom, and once during this timeshe tried to strip off on the school bus. Onone particular occasion in February 2010,she came home from school and trashedthe house. She refused to go back to schooland spent the next eight months at homeand would not leave the house.

The whole family was greatly affectedby these developments. Stress and straintook its toll on my health and I ended up inhospital three times. Jessica and I werehousebound for months on end.

In September 2010 Jessica joined what Ican only describe as the ‘family of St Paul’s’,in Beaumont, Dublin. Under the guidanceand care of the staff there, Jessica hasbloomed into a very happy young lady.

I ask myself what we have learnt fromour experience. I have come to theconclusion that it was a mistake to buy intothe hype that there is a cure for autism.Furthermore, we have learned to love,accept and cherish Jessica as she is, as wejourney through life together as a family. FL

Jessica, aged 12


AUTISM/INTELLECTUAL DISABILITY ANDPERSON-CENTRED BEHAVIOUR SUPPORTS

Most people enjoy being engaged in activities andhaving meaningful relationships. These basic humanrights are important; they make people feel more

independent and competent. It is good to feel the same aseveryone else and be part of what is going on. Having more skillsand better relationships with people are valued by most of us.

People with autism may:* prefer solitary or lone activities* have difficulty understanding feelings of others/ reciprocity* have differences in their expressive and receptive

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 developtheir skills and build their relationships. They may want supportto help them overcome some of the recognised features of theircondition. Supports may come from outside agencies to helpthese people along the way—with communication supports,health care needs, respite or inclusive education. Local andnational organisations offering practical support, developingcoping skills and understanding and emotional support arehighly prized by families. Some families may benefit fromreceiving information.

History has taught communities to look to professionals to care forpeople with disabilities; twenty years of working for change has taughtus that services by themselves can never be enough (Alan Tyne 1992).The social model of disability stresses that the needs ofindividuals 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 hasmoved from focusing solely on the child with intellectualdisabilities, to looking at the needs of the family as a whole.Being part of a family is important, working in partnership withagencies will help people set their own goals and reach theirpotentials.

Over the last decade the former Sisters of Charity of Jesusand Mary Services (now the Muiríosa Foundation) have beenproviding person-centred positive behaviour supports to peoplewith intellectual disabilities. Some of the people have also beenclassified as being within the Autistic Spectrum Continuum.Research shows that around one in four people with anintellectual disability would benefit from having a person-centred positive behaviour support plan. Positive behavioursupport is ‘…characterised by educational, proactive, and respectfulinterventions that involve teaching alternative skills to problembehaviours and changing problematic environments. It blends bestpractices in behavioural technology, educational methods, andecological systems change with person-centered values in order toachieve outcomes that are meaningful to the individual and to his orher family’ (Bambara et al. 2004).

People with an ID/ ASC have been prescribed medicationsto help them overcome challenging behaviours, they may havebeen restrained in the past or may have been excluded becauseof perceived problem behaviours. Positive behaviour supportsprovide people with a means to change environments andoffers people skills to lead better lives.

Person-centred positive behaviour supports plans analysethe factors that affect a particular behaviour. (Target behavioursfor fourteen individuals are displayed in Table 1 below.)

The person-centred positive behaviour supports plans seekto determine why and how a person uses their behaviour inorder to exercise some control over their environment.Information is collected from interviews, observations andassessment tools. The person completing the functionalassessment may be a family member (n, 1) or a support staff (n,13).

In the 14 case studies referred to in this article, thefollowing possible primary functions of the target behaviourswere identified (Tables 2 & 3):

(Durand 1995)

FUNCTION DESCRIPTION

ESCAPE New or difficult or non preferreddemands being presented to theindividual

TANGIBLE May be deprived of tangibles, eg food,music, toys; may be unable to expressthey want something

ATTENTION May be deprived of attention fromothers

SENSORY May be in a barren or restrictedenvironment

Table 1

Table 2

Table 3


A U T I S M

* Creating person centredvisions

* Increase family supports* Low arousal environment* Routine* Consistency* Visual schedule* Fun/ Preferred Activities* Interactional style* Building Rapport* Attention to lighting, sounds,

smells, crowds* Independent working* Finding a friend* Sensory based supports* Staff training in

understanding ASC* Choice boards (First/ Then)* To have more control over

their daily life* Doing things they want* Having fun!

REACTIVESTRATEGIES

ENVIRONMENTAL POSITIVE FOCUSED SITUATIONAL STRATEGIES PROGRAMMING SUPPORT MANAGEMENT

* Predictable Day – visualplanner

* Problem solving -Socialskills

* Coping skills – trauma,waiting

* Skills training - reciprocityin relationships

* Relaxation training* Regular breaks* Self Management* Desensitization – noises,

groups * Setting Limits –

empowerment to havecontrol to make choicesand be aware ofconsequences

* Reward schedules/extrinsic motivators

* Antecedent Control* Stimulus Control* Psychiatry review of

medications* Speech and

Language therapyreferral

* Crisis PreventionIntervention

* Active Listening* Redirection* Stimulus Change* PRN medication –

pain relief, anxiety

PROACTIVE STRATEGIES

Other secondary functions were hypothesised for eachindividual and these included environmental reasons, healthissues (anxiety, pain, skin disorders), attention or sensoryneeds. There are many possibilities why a person isdisplaying a particular behaviour. A well-crafted person-centred positive behaviour supports plan will identify themain setting events or maintaining consequences, andintervene effectively.

Once the functional assessment information iscompleted, an intervention plan is created from theinference made as to why the challenging behaviour occurs.Interventions are broken down into a conceptual framework(LaVigna et al.1995) so that challenging behaviours arereduced and the person has a much improved quality of life.

Some common interventions from the 14 case studies aredetailed in Table 4, above.Below are two examples of how person-centred positivebehaviour supports helped two individuals with autism.

Vignette 1 Seamus is a gentle young man. He delights in music, listening to itand creating it. Seamus lives at home with his mother. Seamus’smother was concerned because Seamus did not sleep well at night.She learned about Positive Behaviour Supports through the servicesSeamus receives from the Sisters of Charity/Muiríosa. Withguidance and support, Seamus and his mother madeenvironmental changes to his lifestyle at home. Seamus now sleepsbetter and takes less sedating medication.

Vignette 2 Roger currently lives in a congregate setting. He prefers quiet placesand people.—he likes to get to know people bit by bit, and try outnew activities gradually. Roger used to appear anxious if he had togo outside; he didn’t want to get into a car. Positive behaviour

supports have now enabled Roger to visit a shop in the localvillage. Roger was supported with desensitisation and relaxationtechniques. He can buy himself a bar of chocolate and he hasgotten to know the shopkeeper. He is supported by people whohave developed a bond with him and he continues to make moreprogress towards community inclusion each time he visits theshop. Quarterly reviews of Roger’s positive behaviour supportplan allow for his circle of support to meet and forge a joyousvision for his future.

To summarise: models of family support have changed overthe last thirty years; the family and the professional havedifferent but equally vital roles to play in supportingindividuals with an intellectual disability and autism.Having autism does not mean that one cannot enjoy lifethe same as everyone else. Person-centred positivebehaviour supports help people to live the lives they wantby helping them to build their own skills, so they are notmarginalised by the behavioural characteristics of autism.Person-centred positive behaviour supports result in areduction in the use of prescribed medications, supportpeople to forge optimal visions for the their future withcircles of support, and see more collaborative work betweenpeople with ID and their families, circles of support andagencies. Person-centred positive behaviour supportsempower individuals with ID and autism to have a voiceand forum to express themselves. There are increases incommunity presence and participation. They offer acommitted focus on fixing environments and not people(Horner 2000) and, as a result, the individual and theirfamily experience enhanced quality of life! FL

Eleanor Finnegan and Kathy O’GradyMuiríosa FoundationLongford/Westmeath

Table 4


Children in general learn througha variety of processes. They learnfrom observing others

participate in activities of daily livingand they also learn through trial anderror processes. Trial and error learningrelies on the child’s ability to try thesame task in a variety of different ways.Children with an ASD often havelimited interest in observing others,with the result that learning throughthe process of observation (a socialprocess) is diminished. Similarly, theroutines and stereotypical movementpatterns associated with ASD canprevent a child from learning through atrial and error process. From myexperience, the level of flexibilityrequired for trial and error can be verydifficult to achieve in the presence ofthe fixation on a routine. For a childwith an ASD, natural development maynot be an automatic process; assistanceis required. As a result parents, teachersor professionals may refer a child to anoccupational therapist. Theoccupational therapist’s main aim is toidentify and work on the elements thathinder a child’s ability to develop andto participate in appropriate activities ofdaily living at home, at school and atplay to the best of the child’s ability.

Independence in activities of dailyliving develops as the child’s ability invarious foundational skills develops.

These foundational skills include, butare not restricted to, motor skills, visualperceptual skills, sensory processingskills, work task planning skills,problem solving skills, social skills, playskills, independent work taskperformance and visual motorintegration skills. If a child hasdifficulties with a particularfoundational skill, all the activities ofdaily living within which thisfoundational skill is required will beaffected negatively.

Children with an ASD often requireoccupational therapy intervention toassist them in acquiring proficiency andindependence in activities of dailyliving, such as personal care activities,hairbrushing, toothbrushing, dressing,eating with utensils, school relatedskills, handwriting and cooperation ingames and sport. Participationrestrictions in these activities can arisefrom having delays or disorderedfoundational skills. An example of thisis a child who is referred withdifficulties and avoidance ofparticipation in ball games, runninggames, physical education classes andteam sport. In a child who does nothave an ASD, the first foundational skilldifficulty that is suspected is a grossmotor skills delay or movementdifficulty. However in the case of childwith an ASD, movement difficulties are

not inherently associated with thediagnosis and social skills and sensoryprocessing skills are more likely to bethe cause of their avoidance or inabilityto participate in sport. All the gamesand activities mentioned above have alarge social skill component thatrequires a child to understand writtenand unwritten rules about games andconduct during these activities. A childhas to use personal space appropriatelyduring contact sport and also possessthe ability to read situations flexibly inorder to be able to respondappropriately. This is a very largechallenge for the child with ASD. Socialskills difficulties are an inherent featureof the ASD diagnosis (APA 1994) andthey make it difficult for a child withthe diagnosis to participate in teamsport and social physical activity.

The social skills element involved inball games and physical education isnot the only difficulty commonlyassociated with an ASD that hindersparticipation; sensory processing abilityis another. During participation, a childhas to contend with noise, visualstimuli, touch and movement. None ofthese elements are predictable duringgames and sport. Many children withASD experience sensory processingdifficulties (Claveirole and Gaughan2011; Kashman and Mora 2002). As aresult they may tend to avoid

AUTISM: An OccupationalTherapist’s experience and perspective

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.


participation in ball games and runninggames. This isolates boys, in particular,in the school yard, where soccer,running and tumbling are the preferredways of interaction between peers.Occupational therapy plays a big role infacilitating the development of socialskills through groups, whereparticipation in group activities, games,turn-taking, joint participation and playactivities is practised in a safeenvironment, thereby allowingfriendships to be formed and socialskills to be learnt.

Learning skills in a therapy group isimportant, but it is even moreimportant that the skills are transferredinto the everyday context of a home,neighbourhood or school. This may nothappen automatically for a child withan ASD; it needs to be facilitated byintegrating the new tasks into thechild’s routine. A child with an ASDmay have an urge to adhere to a specificroutine. Routine can be used as apositive force to facilitate participationin newly learnt activities. Teamworkbetween the therapist, the parents andthe teachers is essential in achievingsuccess in the transfer of skills from onecontext to another. The context of anactivity plays a very important role inachieving activity participation in thechild with ASD.

A child with an ASD might displaythe ability to perform activities of dailyliving in one environment (e.g. home),but not display the same level of skillsin another (e.g. school). In this case theoccupational therapy interventionshould focus on environmentalstrategies, rather than the child’sinherent ability. An assessment iscarried out to investigate contextual

elements of function. This isparticularly important when the childtransitions from one environment toanother.

At times of transition, when thesocial environment changes for thechild with an ASD, difficulties withpreviously mastered skills may arise. Atthese times, intervention is necessary torevisit and re-learn skills that may havebeen mastered in a previous context,but not implemented in the newenvironment. Occupational therapy isespecially meaningful at these times oftransition, e.g. from secondary school touniversity.

Transitions do not need to be assignificant as a change from school touniversity. A transition that could causedifficulties could be as small as havingto come back into class after break.Many social skills and sensory skills arenecessary during times when there arechanges in location and pace during theday and it is often at these times that achild with ASD needs assistance. It isessential that they are prepared for thetransition and that the next task orchapter is evident to them. Transitions,no matter how small, need to besupported and this is best done throughthe creation of a predictable routine.The occupational therapy interventionmay focus on assisting a teacher andparent to create such predictability.

The above information may give theimpression that all skills which areaddressed in occupational therapy arelearnt. The reality is, however, thatsome children never progress fromroutines which require a lot of adultassistance and may remain at a basicdevelopmental level. Their ability toadapt to environmental changes

remains low and their need forsameness remains high. Where a childhas a general learning disability andalso an ASD, the two diagnoses make itdifficult for the child to acquire skills(Claverole and Gaughan 2011).Occupational therapists take this intoaccount in setting realistic goalstogether with teachers, parents andcarers. In cases where it is clear that achild will never become anindependent adult and will requiresupport and supervision to be able tocarry out a basic daily routine, it isessential that therapy is notunrealistically aimed at the norm offunctioning for the child’s age group. Itshould be targeted at the level theindividual’s capability. Teamworkbetween the therapy team, parents andteachers is essential in achieving thebest outcome for the child.

Occupational therapy provides onepiece of the puzzle in a team approachto creating the best potential outcomefor a child or adult with an ASD and ageneral learning disability and theirfamily. FL

Margot Barry is an Occupational Therapistwho has worked with children with specialneeds in a variety of settings and countriessince her qualification in 1996. Shereached the level of clinical specialist andworked in an autism specific multi-disciplinary team of professionals forseveral years. Latterly, she worked as alecturer in the University of Limerick,completed an MSc by Research and Thesisand also worked at Sensational Kids Ltd asthe clinical manager. Margot is committedto working alongside parents and teachersto facilitate best outcomes.

A U T I S M

ABOUT SENSATIONAL KIDSSensational Kids is a registeredcharity set up by parents to provideaccessible, affordable and high-quality clinical services, summercamps and groups for children of allabilities, including children withspecial needs. These services includeoccupational therapy intervention forchildren with an ASD. SensationalKids runs a child development andlearning store which stocks a rangeof skill building and therapyproducts. Sensational Kids is alsocommitted to providing high-classtraining services for those who workwith children with special needs.


IntroductionOwing to its origins based on parentalneeds for their children, St Catherine’sAssociation continues to keep identifiedparental need as one of its core guidinginfluences on service development. Inrecent years, perhaps in part because ofbetter diagnostic practices, the identifiedrate of autism has increased substantiallywithin Wicklow—as it has in many otherparts of the Republic. In turn, this requiredSt Catherine’s to develop services forchildren with autism in line with expressedparental need and evidence-based practices.Traditionally, St Catherine’s was chargedwith providing services to children up tothe age of eighteen with moderate (orlower) intellectual disability. The servicehas expanded in recent years to includeapproximately 100 children with adiagnosis of autism or autistic spectrumdisorder, with the majority having a co-morbid intellectual disability.

ServicesAt the Centre for Early Intervention in StCatherine’s Association, a highly skilleddiagnostic team is available which providesinterdisciplinary assessment involvingclinical psychology, speech and languagetherapy and occupational therapy. Theteam uses an assessment framework in linewith best practice guidelines and uses goldstandard assessment methodology such asthe Autism Diagnostic ObservationSchedule (ADOS). A single diagnostic reportis prepared with agreed priorities forintervention for parents. Parents whosechildren receive a diagnosis of autism (orwho are strongly suspected of beingaffected by autism through external reportsor the use of reliable screeners untilthorough assessment is completed) areeligible for accessing intervention services.The Centre for Early Intervention hassanction for pre-school and school-ageclasses and these are currently based in anumber of locations throughout Wicklow,including Bray and Arklow, to enable easeof access for children and their parents. Thecore model of intervention in these classes

is Early Intensive BehaviouralIntervention, which to-date remains themodel of early intervention associatedwith the best evidence-based outcomes foryoung children with autism. The pre-school and school classes associated withthe Centre were the subject of a whole-school report by the Department ofEducation and Science in 2010, whichprovided a highly positive review of theschool and the quality of teaching andlearning. The report also stated that theevidence of breadth and flexibility in theuse of ABA within the school wascommendable.

Challenges for parentsThere appears to be at least three separatechallenges that parents currentlyexperience if they have a child withautism in County Wicklow: referral andtimely access to appropriate diagnosis andintervention, support for children inmainstream schools, and lack of structuresto enable entry into mainstream schools.As in many other parts of the healthcaresystem in Ireland, the difficulty for parentsappears to be one of getting ‘into thesystem’ in terms of accessing appropriatediagnostic and intervention services fortheir child. Over the years at the Centrefor Early Intervention, parents haveanecdotally reported experiencingsubstantial delays in accessing appropriateservices, with concomitant effects on stressaffecting both themselves and theirfamilies. Although St Catherine’sAssociation has always accepted andcontinues to accept parental referrals,recent changes to referral processes in thecounty are not likely to improve thesituation for parents.

Recent HSE changes have resulted inparents having to deal with at least twosystems prior to securing a place in StCatherine’s. Parents will almost alwaysinitially raise their concerns over a childwith their primary care teams, GPs orpublic health nurses. In the past suchprofessionals could refer children directlyto St Catherine’s Association, but now

they must refer children showingdevelopmental delay to the HSE EarlyIntervention Team and parents then entera second system. Owing to the very heavycaseload of this team, its wide remit andstaffing issues related to the currentembargo on recruitment/replacement ofstaff, this inevitably slows down effectiveidentification of children who potentiallyhave autism. In those cases where childrendo score positive on certain screeninginstruments, they are then referred to StCatherine’s for full assessment by thediagnostic team. Unfortunately delays ofup to six months or longer can take placein some instances. There are close linksbetween the HSE Early Intervention teamfor Wicklow and St Catherine’s (the teamnow being the main referral source to StCatherine’s for children suspected ofhaving an Autistic Spectrum Disorder). Inaddition, St Catherine’s and the team workclosely together to speed up referrals asmuch as possible.

The second challenge for parents, andone that may be replicated in other parts ofthe country, is the absence of a system thatallows children with autism to move froma high-support intensity environment to alow-support environment. The goal ofEarly Intensive Behavioural Intervention,supplemented by multi-disciplinarysupport in the Centre for EarlyIntervention, is for children to acquire thepersonal and academic skills needed tofunction and continue to learn in a lessstructured environment. In other words thesimple goal is get children ‘back on track’so they can attend mainstream schools.However, a difficulty that has arisen is therelative absence of feeder schools inWicklow for children with autism. Themajority of mainstream national schoolshave a cap of two classes with specialdesignation for children with autism andthese typically fill quickly. Such classes maybe appropriate for children following EIBIand would allow opportunities for socialinclusion through less structuredinterventions. However, with these classescapped and almost always full, the

ST CATHERINE'S ASSOCIATIONSERVICES FOR CHILDRENWITH AN ASD DIAGNOSISSt Catherine’s Association was formed in Co. Wicklow in 1970by parents of children with intellectual disability in response tounderdeveloped services for such children in the county at thattime. From very humble beginnings involving simply providing adrop-in service so that parents could do many of the tasks of day-to-day living, it has grown to providingservices for 250 children up to the age of eighteen and their families. Ian Grey, principal psychologist of StCatherine’s Services, details the results of a recent survey on the service today.


opportunities for children to move on areseriously impaired.

The third challenge for parents is forthose children who ‘fall between thecracks’. Services for children with autismin Wicklow suffer from many of thestructural problems evident in other areas.All services have selection criteria andchildren with autism who fail to meet thecriteria for any service may end up withnone. By way of illustration, children withmoderate intellectual disability and autismin special units attached to mainstreamschools are automatically not covered bysome services, owing to the co-morbidmoderate level of intellectual disability.The National Educational PsychologyService (NEPS), which is charged withmeeting the needs of these units, isfrequently unable to do so owing tostructural problems in the system.Although St Catherine’s provides servicesto children with moderate intellectualdisability, it traditionally has only done sowith respect to those children who attendschools or classes belonging to StCatherine’s Association. There are agrowing number of children who are inthis category and in response StCatherine’s Association and the HSE EarlyIntervention Team hope to establish anOutreach Team with joint staffing to meetthe needs of these children.

Parental needs and satisfaction withearly interventionCritical to service development forchildren with a diagnosis of an autismspectrum disorder is determining parents’views on services they currently receiveand also what they identify their needs tobe. As mentioned earlier, St Catherine’sAssociation has always striven to beresponsive to parental needs and it hasrecently undertaken a parental survey todetermine the degree of parentalsatisfaction with its Centre for EarlyIntervention, and also to determinecurrent parental needs in respect of theservice. Using the European ParentSatisfaction Scale about Early Intervention,a total of 49 parents rated six dimensionsof the service: Assistance/Care for Parents,Assistance/Care for Children, SocialEnvironment, Relationship betweenParents and ServiceProviders/Professionals, Model ofCare/Assistance, and Parents’ Rights.Examples of items from these scales andparental scores are given in Table 1. Theresults suggest that overall parents reporthigh levels of satisfaction across thesedimensions, with the highest levels of

satisfaction given by parents being therelationship between parents and staff,and the assistance/care given to children,followed by the model of care/assistancein the Centre for Early Intervention.

Parents’ needs were assessed across sixdomains: Needs for Information, Needsfor Support, Explaining to Others,Community Services, Financial Needsand Family Functioning. Needs forInformation and Needs for Support werethe broad areas where parents expressedthe greatest need (see Table 2).Percentages given relate to the number ofparents who reported definitely needinghelp in relation to the content of thatindividual item.

These results shine a light on theneeds of parents attending the Centre forEarly Intervention. Information clearlyconstitutes the greatest need, particularlyaround services that might be available inthe future. As service providers, we mayoften forget that parents always have a

longterm view and the high numbersrequiring help with this suggests that wehave to begin informing parents from theoutset of the options they may have inthe future. This, however, is cruciallydependent on how their child responds toearly intervention, so it is not alwayspossible to be as predictive as parentsmight wish. Nonetheless, even this shouldbe communicated and as muchinformation as possible given.

ConclusionSt Catherine’s Association continues tostrive to provide high quality assessmentand intervention practices for the childrenof County Wicklow. Parents do experiencedelays in accessing the service, in part dueto structural issues within the county, andit is hoped that these can be resolvedbecause it places parents underunnecessary strain. In respect of futureservice development, the next challenge isto take account what parents themselvesneed from the Centre for EarlyIntervention and incorporate them intothe service in the best way to meet theirneeds. Despite these needs, the surveyresults did reveal high levels of satisfactionwith the service, particularly in thedomains of relationships with staff, theassistance and care provided to childrenand, perhaps most importantly, with themodel of intervention/care itself. Withthese three key critical factors in place, thefoundation exists to meet the needs of thechildren and their families. FL

A U T I S M

TABLE 1: Parental Satisfaction withEarly Intervention

EPSSEI Scales Max. Mean Score Score

Assistance to parents 75 56 Assistance to children 60 52 Social Relationships 15 13 Model of Care/Assistance 75 64 Parents’ Rights 15 12 Other Agencies 15 10 Relationship with Staff 30 27

TABLE 2: Parents’ Needs around Early Intervention

Needs for Information % I need more information about my child’s condition or disability 36%I need more information about how to handle my child’s behaviour 47%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%I need more information about how children with disabilities grow and develop 73%

Needs for SupportI need more opportunities to meet and talk with parents of children with autism 48%I need to have more time just to talk with my child’s teacher or therapist 35%I need reading material about other people who have a child similar to mine 38%I need to have time for myself 51%

Explaining to OthersI need more help in how to explain my child’s condition to his/her siblings 22%

Community ServicesI need help locating a doctor who understands me and my child’s needs 22%I need help locating baby-sitters who are willing and able to care for my child 20%

Financial NeedsI need more help in paying for expenses such as food, housing, medical care, clothing 28%

Family FunctioningOur family needs help in discussing problems and reaching solutions 24%


Introduction/backgroundThe Health Information and Quality Authority (HIQA) is thestatutory authority with responsibility for setting standards forhealth and social care services and for ensuring that suchstandards are met. HIQA is responsible for the registration andinspection of residential services for people with disabilitiesunder the Health Act (2007). The Authority published NationalQuality Standards: Residential Services for People withDisabilities in 2009. There are regulations being developed atpresent to give statutory strength to the standards and whichorganisations will be measured against as part of the registrationand inspection process. These regulations will also providefurther detail to organisations on what is expected of them.

Preparing staff for registration and inspection The registration and regulation system will not involve onlysenior managers; staff at all levels and carrying out all types ofroles will be part of the process. It is vital that adequate time andresources are deployed in advance to ensure that all staff areprepared for inspections.

Table 1 provides some direct quotes from inspection reportsfrom older persons’ services, in relation to issues relevant to staff.These are useful as they indicate good practice and poor practiceidentified by inspectors in various reports of inspections.

As can be seen from the table, inspectors utilise threedifferent approaches to gathering evidence and formingjudgments during inspections. This approach to inspection is setout in the HIQA National Quality Standards: Residential Servicesfor People with Disabilities, as illustrated by the following:

‘An inspection typically consists of three elements: analysis ofrecords and documentation; interviews with individuals,families, professionals involved with the service and those whoprovide and work in the service; and observation of practice.’

Based on the above and based on our experience of working withservices who have undergone inspections, inspectors appear tospend considerable time during inspections: � Observing staff practice and the type and quality of service

that they provide. This includes observing the interactions ofstaff with residents and with other staff; the manner inwhich staff engage with residents; the quality of staff practicein core areas such as medication management, reporting andrecording and care practice; the quality of staff supervision;and the maintenance of dignity and respect.

� Auditing documentation and records including, but notrestricted to, resident’s files, personal profiles, individualplans, communication records, food menus, medicationadministration records, staff meetings, records of staffsupervision, records of complaints and the complaints log,and residents’ financial records.

� Interviewing staff with regard to their knowledge ofresidents, their knowledge of core policies and procedures,

their understanding of the standards and the regulations,their knowledge of residents’ assessed needs and individualcare and person-centred plans, and their understanding ofkey safety issues in the service.

How best to prepare staff for the inspection andregistration processIn our experience, it is insufficient just to provide staff withcopies of the standards and expect them to fully understand andimplement the standards based on reading them. Organisationsneed to focus their quality processes heavily on educating staffon the standards and regulations and building a culture ofquality improvement within staff teams.

In order to prepare staff for the level of scrutiny that clearlyoccurs in HIQA inspections, it is vital that managers providesupport and guidance to their staff. Staff need to be clear on howthe system for regulation and registration works and what theirexact roles are. It is important that all staff know how evidence iscollected and how they may be involved in the inspection andinformation gathering process. Inspectors will gather

Joe Wolfe and Trevor Nesirky introduce the second in a series of articles designedto support service providers in preparing for registration and inspection by the HealthInformation and Quality Authority. It draws on the lessons learned from publishedreports of HIQA inspections of Older Persons Services and from their experience inworking with service providers in that area who have undergone the registration andinspection process. The article provides practical advice rather than academiccomment. Later articles in the series will focus on conducting self-assessments andaudits, building evidence for inspections and preparing for follow-up visits.

PREPARING FOR REGISTRATION ANDINSPECTION OF RESIDENTIAL SERVICESFOR PEOPLE WITH DISABILITIES

Table 1: Examples from HIQA inspection reports, asrelevant to staffExamples of good practice, as taken from HIQA reports:

— “Inspectors saw staff interacting positively with residents. Themanner in which staff addressed residents was respectful, theystopped to talk and give residents their time, maintaining eyecontact and chatting to them”

— “All staff interviewed displayed good knowledge of the centre’spolicy and procedures..communication links throughout the centrewere good”

— “Staff training records viewed showed training in areas identifiedas being mandatory requirements or meeting residents’specificneeds was delivered to staff”

— “The meal was unrushed and was a social occasion for all”

— “Staff demonstrated a clear understanding of their roles andresponsibilities”

Examples of poor practice, as taken from HIQA reports:

— “Policies and procedures were inadequate....there was no evidencethat they had been implemented. Staff spoken to were unaware oftheir contents.”

— “Inspectors observed staff address female residents usingterminology such as good girl. This form of address did notpreserve the dignity of the residents”

— “Food was poorly presented, all ingredients were blendedtogether”

— “The nursing documentation and language used therein did notprovide evidence of person-centred or dignified care for suchresidents”

— “The activities nurse and occupational therapist develop goals forthe residents but these are not available to other staff and are notincorporated into residents’ daily routine”


information from a number of different sources and staff need tobe aware of their responsibilities in each area. Staff must also beaware of the different types of inspections (announced andunannounced, registration and non-registration-related) and therequirements on them for the different types of inspections. Somequestions that managers and providers should ask themselves inrelation to inspections are:

In addition to the above, we believe that managers and providersneed to focus on five key areas at the start:

Key Area 1: Protection� Can staff demonstrate an understanding of the systems in place

to maintain safety?� Is there evidence that staff have read and understood the

relevant documentation?� Can staff identify the signs and symptoms of abuse?� Can staff describe the nature of abuse in settings for people

with disability?� Are staff aware of the particular vulnerability of people with

disabilities to being abused?� Do staff know who to report concerns to?� Is there clear evidence of staff training in relation to protection

work and is there a plan in place to address any essentialunmet training needs?

� Are staff clear on how to complete the relevant documentationand are they aware of inappropriate and appropriateterminology?

� Are staff trained in understanding and responding positively toproblematic behaviour?

� Can staff demonstrate that they understand behaviour whichmay indicate that a service user has a concern or complaintwhich cannot be communicated in other ways?

Key Area 2: Fire � Can staff demonstrate an understanding of the core elements

of the policies and procedures relating to fire safety, includingthe location of fire exits, fire alarm, fire equipment andassembly points and the procedure to follow in the event of afire?

� Is there clear evidence of staff training in relation to fire safetyand is there a plan in place to address any unmet training needs?

� Can staff answer questions relating to their role with regard tofire safety?

� Is there evidence that all staff have been involved in fire drills?

Key Area 3: Medication� Can staff demonstrate an understanding of their role in

relation to medication management?� Is there evidence that staff have been given the relevant

medication management training?

� Is there evidence that staff have read and understood anyrelevant policy documents?

� Are staff aware of any individualised requirements such asthe administration of PRN medication?

� Can staff demonstrate competence in medicationmanagement?

� Have audits been conducted with regard to medicationmanagement and have corrective actions beenimplemented?

� Is there evidence in the records of staff competence inrecording medication management issues?

Key Area 4: Health and Safety� Are staff aware of and clear on any procedures that are in

place for the management of major risks such as missingpersons?

� Are staff aware of their responsibilities in relation to:personal safety, fire safety, lifting, moving and food hygiene?

� Can staff demonstrate an understanding of any riskassessments that are relevant to their work?

� Is there clear evidence of staff training in relation to keyhealth and safety issues relevant to their work and is there aplan in place to address any essential unmet training needs?

� Can staff demonstrate competence in safe working practices?� Do staff know how to and where to report and record any

safety concerns?

Key area 5: Care Practice� Are staff competent and confident to carry out care

practices?� Is there evidence of staff receiving training in key areas of

care needs of the residents they are supporting?� Can staff demonstrate an understanding of their role in

relation to the delivery of intimate and personal care?� Is privacy provided when assistance is being given in

relation to individual care (such as bathing, washing orgoing to the toilet)?

� Are service users treated with respect by staff whenindividual care is being provided?

� Are mealtimes a time to relax and socialise?� Are staff clear where they can access additional support and

advice?� Can staff demonstrate an understanding of the

individualised care needs of those service users they aresupporting and does this understanding match what isrecorded in the person’s file/plan?

ConclusionClearly, the preparation of staff for inspection and registrationof services is fundamental. There are valuable lessons to belearned from the inspections of services for older persons and,in particular, on how inspectors appear to have conductedinspections. We hope that the views we have expressed fromour experience in working with older persons’ services andfrom our analysis of the reports of inspections in this area areuseful in supporting services for people with disabilities.While our focus here has been on key areas of safety andwellbeing, the principles and processes set out can equally beapplied to the other standards and regulation that will beinspected. Every opportunity should be taken to build staffcompetence and confidence; staff supervision and appraisal,team meetings and self-assessment and audit processes areideal for doing this. FL

S T A N D A R D S

Table 2: Key questions for managers and providers inpreparing staff— Are staff aware of the standards they should work to and on the

regulations (to be published by HIQA)?

— Are staff comfortable with being observed?

— Are staff aware of the documentation they must complete in generaland the standards required with regard to documentation?

— Are staff aware of the contents of the key documents?

— Are staff aware of the areas they may be questioned about?

— Are staff used to being interviewed about their work and thestandard they provide?

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