lost in translation

Dillenburger, K., McKerr, L., & Jordan, J.A. (2014). Lost in translation:

Public policies, evidence-based practice, and Autism Spectrum Disorder.

International Journal of Disability, Development and Education (Special Edition).

Lost in Translation: Public policies, evidence-based practice, and Autism SpectrumDisorderKarola Dillenburger*, Lyn McKerr, and Julie-Ann JordanCentre for Behaviour Analysis, School of Education, Queen’s University Belfast, Belfast, United Kingdom

Prevalence rates of autism spectrum disorder (ASD) have risendramatically over the past few decades (now estimated at 1:50 children;Centers for Disease Control and Prevention [CDC], 2013). The estimatedtotal annual costs to the public purse in the United States is US$126billion (Autism Speaks, 2012), with an individual lifetime cost in theUK estimated between £3.1-4.6 million, depending on the level offunctioning (Knapp, Romeo, & Beecham 2009). The United Nation Conventionfor the Rights of Persons with Disabilities (CRPD, 2006) has enshrinedfull and equal human rights, for example, for inclusion, education,employment and there is ample evidence that much can be achieved throughadequate support and early intensive behavioural interventions (Fein etal., 2013). Not surprisingly, worldwide most Governments have devisedlaws, policies, and strategies to improve services related to ASD, yetintriguingly, the approaches differ considerably across the globe. UsingNorthern Ireland as a case in point, we look at relevant Governmentaldocuments and offer international comparisons that illustrateinconsistencies akin to a “post code lottery” of services.

* Corresponding author. Email: [email protected]

2 K. Dillenburger et al.

Keywords: Autism, disability policies, Early Intensive Behavioural

Intervention, Applied Behavior Analysis, ABA,

Introduction

The human rights of persons with disability are enshrined in the

United Nations Convention on the Rights of Persons with

Disabilities (CRPD, 2006). The purpose of the CRPD is:

to promote, protect and ensure the full and equal enjoyment

of all human rights and fundamental freedom by all persons

with disabilities, and to promote respect for their inherent

dignity. (Article 1)

The CRPD covers a whole range of specific rights, including

the right to education (Article 24), habilitation and

rehabilitation (Article 26), work and employment (Article 27), and

the right to independence and inclusion (Article 19). Given that

most United Nations member governments have signed up to the CRPD

(Australia adopted it in 2006 while the UK and the USA ratified it

in 2009), regular monitoring systems are in place, i.e., 4-yearly

reporting cycles.

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 3

In this article, we explore how the CRPD and related research

into evidence-based practice translates into policies and

strategies designed support persons diagnosed with Autism Spectrum

Disorder (ASD) and we draw comparisons between the UK and other

international Government approaches, e.g., USA and Canada.

Devolved governments in the UK are bound by international

agreements such as the CRPD, and generally domestic policy aims to

address inequalities for individuals with disabilities, including

those affected by ASD and their families. Using Northern Ireland

as a case in point, we explore how international research and the

CRPD have impacted on the development of policies and strategies

designed to address the rights and needs of individuals with ASD,

with a particular focus on quality of life, education, health, and

employment.

Research on Prevalence, Economics, and Best Practice

The number of people diagnosed with ASD has doubled in the last

four years, from 1 in 110 (Centers for Disease Control and

Prevention [CDC], 2009) to 1 in 50 (CDC, 2013). Northern Ireland

prevalence rates correspond, with 1.8% (1:56) of all school age

children affected by autism (Community Information Branch, 2013).


Whether the rise in prevalence rates is caused by diagnosis

becoming more precise, over-diagnosing, quality of local services,

or an actual rise in incidence remains a much-debated issue

(Carey, 2012; Gillberg, Cederlund, Lamberg, & Zeijlon, 2006; Park,

2012). Despite the fact that internationally, research regarding

ASD has grown from 45 reported studies in the 1950s to 8575

publications in the 2000s (Autism Reading Room, 2013), presently,

most of funding bodies focus on research on biology (22%),

diagnosis (11%), and risk factors (20%), rather than on treatment

and interventions (17%) or services (16%) (Interagency Autism

Coordinating Committee [IACC], 2010).

Families of children with ASD face three times the cost, while

earning 28% less than families with typically developing children;

they earn 21% less than families of children with other health

care issues (Cidav, Marcus, & Mandell, 2012). Medical cost for

individuals with an ASD are six times greater than for people

without an ASD (CDC, 2013) and, in the USA, the annual cost of

autism is estimated to be US$137 billion (Autism Speaks, 2012). In

Australia, the annual economic costs of Autism Spectrum Disorder


(ASD) is between AUD$4.5 billion and AUD$7.2 billion (Synergies

Economic Consulting, 2007). In the UK, with a population of about

a fifth of the USA, the annual total cost of autism is estimated

£34 billion (equating to US$54 million) (Knapp, Romeo, & Beecham,

2009).

Depending on the level of functioning, the estimated lifetime

cost varies from £3.1-4.6 million in the UK (Knapp et al., 2009)

or US$1.4-2.3 million in the USA (Autism Speaks, 2012). Most of

this cost occurs during adulthood, due to the need for specialist

residential care and under- or unemployment; only 15% of adults

with ASD in England are in paid employment (Rosenblatt, 2008).

Government decisions about the most appropriate response to

diagnosis are very important given that there is evidence that

about 20-40% of children who receive appropriate Early Intensive

Behavioural Interventions (EIBI) can achieve “optimal outcomes”

(Fein et al., 2013), potentially saving 65% of the cost of adult

service provision (Järbrink & Knapp, 2001). Early Intensive

Behavioural Interventions (EIBI) are developed through Applied

Behaviour Analysis [ABA] (see Cooper, Herron, & Heward, 2007).

Outcome studies show that children who benefitted from ABA-based


individually tailored interventions achieve milder autism

severity, higher adaptive functioning, and higher cognitive skills

(Flanagan, Perry, & Freeman, 2012; Virués-Ortega, 2010).

Dawson et al. (2012) evidenced the positive impact of EIBI on

brain development, particularly during the period of time during

which brain plasticity is greatest, i.e., very early childhood. In

fact, Dawson et al. (2012) found that “early behavioral

intervention is associated with normalized patterns of brain

activity, which is associated with improvements in social

behavior, in young children with autism spectrum disorder” (p.

1150). Dawson (2008) went as far as speculating that early

detection and effective ABA-based interventions during this time

could lead to the “prevention of autism”, noting that “prevention

will entail detecting infants at risk before the full syndrome is

present and implementing treatments designed to alter the course

of early behavioral and brain development” (p. 775). While EIBI is

particularly effective when applied early in the child’s life,

ABA-based interventions have shown to be effective during later

childhood, adolescence and adulthood, with improvements in social


and communication skills and a reduction in disruptive behaviours

(Cooper et al., 2007; Foxx, 2008; McClannahan, MacDuff, & Krantz,

2002). Effective continuing education programmes which build up

independent living skills reduce barriers to social and economic

inclusion for adults with autism, and allow greater participation

in everyday activities. In the Princeton Child Development

Institute, adolescents and adults participated in continuing

“life-skills” development courses; of 15 adults enrolled in the

course, 14 had supported employment experience and 11 were

currently in a diverse range of employment, from data inputting to

hotel house-keeping (McClannahan et al., 2002).

Clearly, getting intervention right can have positive economic

consequences, but even more important is the promotion of the

human rights of persons affected by ASD (CRPD, 2006) and

consequently, the social and emotional impacts in terms of long-

term quality of life for families and society (Dillenburger,

Keenan, Doherty, Byrne, & Gallagher, 2010).

In 1999, Ontario, Canada, implemented large-scale, publicly

funded Intensive Behavior Intervention (IBI) programmes (Freeman &

Perry, 2010), based on an estimate of annual saving of CAD$45


million (Motiwala, Gupta, Lilly, Ungar, & Coyte, 2006). In 2002,

Minister Elliott announced that Ontario considered itself a leader

in autism services for children (Ontario, 2002) and continued to

demonstrate this by more than doubling investment in autism

services for young children so that they can get the help they

need; stating that they had increased intensive behavioural

intervention services for young children. “We are the first

government in Ontario to fund an intensive intervention program

for children with autism aged 2 to 5”. (ibid.,Year End

Accomplishments section, para. 4 ).

In the Netherlands, a recent study concluded that a

“compelling argument for the provision of EIBI is long-term

savings which are approximately €1,103,067 [US$1.3million] from

age 3 to 65 years per individual with ASD. Extending these costs

to the whole Dutch ASD population, cost savings of €109.2-€182

billion have been estimated, excluding costs associated with

inflation” (Peters-Scheffer, Didden, Korzilius, & Matson, 2012).

In the USA, these kinds of potential cost savings have been

known for a long time, where savings between US$656,000 to


US$1,082,000 per person aged 3–55 years have been estimated

(Jacobson, Mulick, & Green, 1998). These kinds of figures have

been stable across time (Autism Speaks, 2013; Wyman, 2011) and

EIBI has become so widespread that it is viewed as “treatment as

usual” condition (Fein et al., 2013). At federal level, ABA-based

interventions are now considered medically as well as

educationally necessary, with appropriate laws and policies in

place to facilitate widespread use (Office for Personnel

Management, 2012; United States District Court, 2013). The number

of appropriately qualified staff to supervise intervention

programmes, i.e., Board Certified Behavior Analysts (BCBA), has

doubled in the last five years (Behavior Analyst Certification

Board [BACB], 2013).

There are multiple large-scale systematic reviews and meta-

analysis of research evidence. In 1998, Division 53 of the

American Psychological Association found:

The literature on effective focal treatments in autism is

plentiful and published in a variety of journals, in the

fields of developmental disabilities, applied behavior

analysis, and discipline specific journals. These studies


generally consist of single-subject multiple-baseline

designs or small sample treatment designs. Behavioral

treatment approaches are particularly well represented in

this body of literature and have been amply demonstrated to

be effective in reducing symptom frequency and severity as

well as in increasing the development of adaptive skills.

(Rogers, 1998, p. 168)

In 1999, the US Surgeon General concluded: “Thirty years of

research demonstrated the efficacy of applied behavioral methods

in reducing inappropriate behavior and in increasing

communication, learning, and appropriate social behavior”

(Satcher, 1999, p. 164).

In 1999, the New York State Department of Health said:

It is recommended that principles of applied behavior

analysis (ABA) and behavior intervention strategies be

included as important elements in any intervention program

for young children with autism …. No adequate evidence has

been found that supports the effectiveness of sensory

integration therapy for treating autism. Therefore, sensory

integration therapy is not recommended as a primary

intervention for young children with autism. (pp. 138-140)


Also in 1999, the American Academy of Neurology, American

Academy of Family Physicians, American Academy of Pediatrics,

American Psychological Association, Society for Developmental and

Behavioral Pediatrics, and the National Institute of Child Health

& Human Development found:

The press for early identification comes from evidence

gathered over the past 10 years that intensive early

intervention in optimal educational settings results in

improved outcomes in most young children with autism,

including speech in 75% or more and significant increases in

rates of developmental progress and intellectual

performance… Autism must be recognized as a medical

disorder, and managed care policy must cease to deny

appropriate medical or other therapeutic care under the

rubric of “developmental delay” or “mental health condition

…. (Filipek et al., 1999)

Over subsequent years, equally strong endorsements came from

the American Academy of Child and Adolescent Psychiatry (Volkmar,

Cook, Pomeroy, Realmuto, & Tanguay, 1999), the Maine

Administrators of Services for Children with Disabilities (2000),

the American Academy of Paediatrics (2001), the National Research

Council (2001), the Mayo Clinic and Harvard paediatricians


(Barbaresi, Katusic, & Voigt, 2006), The Department of Health

Policy, Management and Evaluation of the University of Toronto, ON

(Motiwala et al., 2006), The Hawaii Department of Health Empirical

Basis to Services Task Force (Chorpita & Daleiden, 2007; Chorpita

et al., 2011), the California Legislative Blue Ribbon Commission

on Autism (2007), the American Academy of Pediatrics (Myers,

Johnson, & the American Academy of Pediatrics Council on Children

With Disabilities, 2007), Division 53 of the American

Psychological Association Task Force on Empirically Supported

Child Psychotherapy (Rogers & Vismara, 2008), the National

Institute of Mental Health [NIMH](2008), the US Agency for Health

Care Research and Quality [AHRQ] (Warren, et al., 2011), and the

Centers for Disease Control and Prevention (CDC; 2012). Quite

recently, a review by US and British paediatricians in the Lancet,

found:

The most well researched treatment programmes are based on

principles of applied behaviour analysis. Treatments based

on such principles represent a wide range of early

intervention strategies for children with autism. (Levy,

Mandell, & Schultz, 2009, p. 1627)


Thompson (2013) summarised, in his overview of the history and

progress of, and challenges for, autism research and services for

young children:

Over these past 30 years, young people with autism have gone

from receiving essentially no proactive treatment, resulting

in lives languishing in institutions, to today, when half of

children receiving EIBI treatment subsequently participate

in regular classrooms alongside their peers. The future has

entirely changed for young people with autism. (p.81)

Translating Research into Legislation and Policy

A drive to co-ordinate autism services has resulted in autism

specific legislation in many jurisdictions. In the US, the

Combating Autism Act of 2006 (renewed by President Barak Obama in

2011) is a comprehensive piece of legislation that, among other

actions, requires the Secretary of Health and Human Services to

establish regional centres of excellence through the Centers for

Disease Control and Prevention (CDC), and to provide evidence-

based interventions for individuals and their families through

both state and federal programmes. It mandates the establishment

of a continuing education curriculum and requires the Secretary of

Health and Human Services to develop guidelines for evidence-based


interventions and to disseminate this information. It also

established an Interagency Autism Coordinating Committee for

autism services, which is charged with developing (and annually

updating) a strategic plan for autism research.

In the USA healthcare is largely covered through an insurance

system and the Autism Insurance Act of 2008 stipulates that “all

private insurers must provide for diagnosis, treatments,

psychological services, consultations, behavioral therapies, care

services, and medication for individuals with ASDs up to 21 years

of age” (Special Learning, 2011). Regionally, 34 states and the

District of Columbia now have legislation that mandate the

healthcare system (i.e., healthcare insurance) to cover autism

interventions, including specifically Applied Behaviour Analysis

(ABA) based interventions. ABA-based methods are widely endorsed

and have become routine interventions for ASD; they are covered by

healthcare for all federal employees by the Office of Personnel

Management, those insured through Tricare, Medicaid, and other

health insurances (in almost all States) and many of private

large-scale multinational employer insurance companies (Autism


Speaks, 2012). The new Patient Protection and Affordable Care Act

(2010), also known as Obama Care, was designed to increase health

coverage for everyone and, from 2014, includes coverage

specifically for behavioural health treatments for ASD.

The Australian Government Department of Social Services

(Prior, Roberts, Rodger, Williams, & Sutherland, 2011; Roberts &

Prior, 2006) recommends, ABA-based interventions as the only

interventions considered eligible for funding “based on

established research evidence” under the Helping Children with

Autism (HCWA) Package (Prior & Roberts, 2012, p.12).

However, in most of the rest of the world ABA-based

interventions are not endorsed by Governments and therefore the

future of children with ASD has not changed, yet. EIBI and other

ABA-based interventions are neither routinely delivered nor funded

through health care or education departments. Instead, the deficit

model of ASD as a lifelong disability is widespread, for example

in the UK, Jones, Gliga, Bedford, Charman, and Johnson (2013)

recently reiterated the view that due to developmental mechanisms

underlying this disorder, ASD “unfolds”, with no reference to how

nurturing environments, such as those created in the context of


individually tailored ABA-based interventions, can influence and

promote development (see also Jones, Ellins, Guldberg, Jordan,

MacLeod, & Plimley, 2007). As a result of this prevailing view,

existing ASD-related Government policies, strategies and services

in the UK have not produced tangible remedial or economic results

(Carers NI, 2014; Rosenblatt 2008) and the majority of children

with autism become adults with significant support needs who

“experience a substantially poorer quality of life than non-

disabled peers” (Barnes, 1992, p. 2). Given that institutions are

no longer available, 68% of adults with ASD “languish” fully

dependent on their aging parents, who struggle with their

son/daughter’s challenging behaviours and lack of life skills

(Dillenburger & McKerr, 2010).

Despite international assertion of the right to education and

employment (CRPD, 2006) for adults with disabilities in the UK,

the two main barriers to inclusion in society remain education and

employment as outlined in the government report Lifetime Opportunities,

(Office of the First Minister and Deputy First Minister [OFMDFM]

2010). Good suitable education early in life is the key to


preparing individuals with disabilities to take their place in

society and the workforce as reported in the Labour Force Survey,

(Department of Enterprise, Trade and Investment [DETI] 2009).

Figures for employment of adults with ASD are not routinely

collated by employment agencies or government departments however

a survey by the National Autistic Society (NAS) in England

(Rosenblatt, 2008) found that of their sample of 1,179 adults with

ASD, only 15% were in full time employment. Although there is

evidence to suggest that supported employment programmes can

enhance the chances of obtaining a well-matched jobs (Howlin,

Alcock, & Burkin, 2005), this is not always available,

particularly for those with more profound disabilities, especially

if they display behaviours that challenge (Jamison, 2012; Lundy,

Byrne, & McKeown, 2012).

The majority of adults with ASD want to work (Barnard, Harvey,

Potter & Prior, 2001; Dillenburger & McKerr, 2011), but most of

those who are employed are in poorly paid jobs, sheltered

employment, or specialist training schemes (Howlin, Goode, Hutton,

& Rutter, 2004) and 50% of those who left or lost their job report

that bullying and discrimination in the workplace as well as


factors related to ASD were responsible (Bancroft, Batten,

Lambert, & Madders, 2012). In economic terms, unemployment

represents 36% of the estimated annual cost of adults with autism

in the UK (Knapp et al., 2009), the USA (Synergies Economic

Consulting, 2007), and Australia (Ganz, 2007).

UK Practice Guidelines

In the UK, the devolved governmental system makes an overall

national strategy difficult. In England and Wales, the Autism Act

was introduced in 2009 but it does not cover the needs of

children. In Wales, the Action Plan extended the remit of the

Autism Act 2009 to cover “lifespan” autism services in the areas

of health, social care and education with a focus on raising

awareness and documenting existing autism services for effective

future development (Welsh Assembly Government, 2011). The Scottish

Strategy for Autism also has a lifespan perspective, with a focus

on improving mainstream services and diagnoses with effective

transition planning (Scottish Government, 2011). However, despite

the Act and subsequent Autism Strategies, there are substantial


concerns that adequate support is not reaching many adults with

ASD (National Autistic Society [NAS], 2013).

In the UK, best practice in health and social care is shaped

by guidelines issued through the National Institute for Clinical

Excellence (NICE). In collaboration with the Social Care Institute

for Excellence, NICE published three different best practice

guidelines related to ASD:

1. Autism diagnosis in children and young people.

Recognition, referral and diagnosis of children and young

people on the autism spectrum (National Institute for

Clinical Excellence, 2011);

2. Autism: recognition, referral, diagnosis and management

of adults on the autism spectrum (National Institute for

Clinical Excellence, 2012);

3. Guidelines for Autism - Management of autism in children

and young people. (National Institute for Clinical

Excellence, 2013).

UK National Health Service, practitioners and clinicians rely

heavily on NICE guidelines and usually £millions are spent on the

basis of NICE recommendations; for example, Improving Access


Psychological Therapies (IAPT), an NHS programme for treating

people with depression and anxiety disorders, that was rolled out

across England on the basis of NICE guidelines, was funded by the

UK government in excess of £700million between 2007-2014/15

(Improving Access Psychological Therapies, 2012).

While the ASD related NICE guidelines make numerous

recommendations and ‘functional assessment of behaviour’ is

mentioned in conjunction with “behaviour that challenges”, there

is no mention of applied behaviour analysis or EIBI in any one of

these guidelines.

Northern Ireland: Case in point

In Northern Ireland, the Autism Act NI (2011) is a comparatively

short document. It amends the definition of disability in the

Disability Discrimination Act 1995 (Schedule 1) to include

“difficulties with social interaction” and “with forming social

relationships” and it mandates the development of a cross-

departmental Autism Strategy (2013-2020) and short-term 2-3 year

action plans that are to be reviewed regularly.


Northern Ireland (NI) has a population of just over 1.8

million (Northern Ireland Statistical Research Agency [NISRA],

2013) and a complex devolved Government, i.e., the NI Assembly.

All 12 ministerial roles, apart from the Minister of Justice, are

allocated on the basis of a Mandatory Coalition between elected

representatives, most of whose political orientation is either

Unionist, with a focus on the union with the United Kingdom or

Nationalist, striving to achieve a United Ireland.

Health and social care is integrated under the Department of

Health, Social Services and Public Safety (DHSSPS), with a Health

and Social Care (HSC) Board responsible for commissioning

services, resource and performance management, and service

improvement. Five Health and Social Care (HSC) Trusts deliver

health and social care services across Northern Ireland; a sixth

Trust provides Northern Ireland’s Ambulance Service (Department of

Health, Social Services and Public Safety, 2013). Autism provision

can be categorised under mental health, learning disability,

and/or child health (Department of Health, Social Services and

Public Safety, 2006) and historically there was little co-

ordination between Trusts.


Education (from pre-school to 19 years) is the responsibility

of the Department of Education (DENI) and administered by five

Education and Library Boards (ELB) that overlap geographically

with the HSC Trusts. Preparing people for work and supporting the

economy is the responsibility of the Department for Employment and

Learning (DEL) and of course, other departments are also important

for autism services. However, not surprisingly, historically

communication and co-ordination between the Government departments

has been difficult.

In 2002, the first autism related report was published in

Northern Ireland, the Task Group on Autism, (DENI, 2002,). In

order to gain an overview of ASD related Government actions in

Northland Ireland since then, we conducted a comprehensive search

of policies, strategies and relevant reports. We searched webpages

or sent emails to all Government departments, as well as the

Equality Commission and the Northern Ireland Commissioner for

Children and Young People. We searched webpages or e-mailed all

autism-specific voluntary organisations, disability and anti-

poverty charities, and academic institutions. The reference


section of each report was scrutinised and any relevant reports we

found were also included.

After an initial scoping exercise, we grouped all reports,

policies and strategies that were relevant to autism under the

themes of disability, education, health, housing, poverty, social

inclusion, and youth justice. Given that people with autism also

use “core services”, such as primary care, transport etc., we

added the category “non-autism specific” for reports that were

relevant but did not necessarily include the search terms autism,

autistic, ASD, or Asperger.

A total of 15 reports, strategies and action plans specific to

autism in Northern Ireland were identified. A further 70 documents

were identified that covered issues relevant to individuals with

ASD and their families, including 6 documents that were produced

as a result of cross-departmental or interagency working. Figure 1

shows the number of reports published since 2002, some of which

were autism specific while others, although not autism specific,

were relevant.

[f] Insert Figure 1 near here/[f]


The three early autism-specific initiatives that had

particularly long-lasting impact across Northern Ireland were the

following: (1) Task Group Report on Autism (Department of

Education, 2002); (2) Independent Review of Autism Services 2007-

2008 also known as the ‘Maginness Review’; (DHSSPS, 2008); and (3)

Regional Autism Spectrum Disorder Network (HSCB, 2012a); these

have now been followed by the Autism Strategy (2013-2020) and

first Autism Action Plan (2013-2015) (Northern Ireland Executive,

2014).

Task Group Report on Autism (DENI, 2002)

Task Group Report on Autism (DENI, 2002) was the first major

initiative regarding autism services in Northern Ireland and was

set up as part of the North-South Ministerial Council initiative,

with representatives from DENI working in close contact with a

parallel Task Force Report on Autism ( Department of Education and

Science, 2001) in the Republic of Ireland. The report made a total

of 109 recommendations, including the need for clear multi-agency

pathway for diagnosis, the appointment of ASD support teams in all


Education and Library Boards, and the need for cooperation between

Education Boards and Health and Social Care Trusts.

In terms of interventions, the Task Group asserted “preference

for no single approach” (3(i), p. vii) and promoted a so-called

rather ill-defined “eclectic” approach to autism interventions.

There is evidence that eclectic approaches are less effective than

ABA-based interventions (Howard, Sparkman, Cohen, Green, &

Stanislaw, 2005). The eclectic approach has been heavily

criticised for not producing measurable outcomes, incorporating a

mixture of interventions that are not evidence-based, being

vulnerable to conflicting or contradictory theoretical bases,

lacking component analysis, and the impossibility of staff

training in all possible interventions (Dillenburger, 2011). Yet,

the Task Group Report (Department of Education, 2002) has heavily

influenced interventions approaches locally and despite the fact

that a number of parents have gone as far as moving house to

access better services (Dillenburger & McKerr, 2011), to date 12

years later, it remains the cornerstone of Department of Education

policy for children and young people with ASD (Department of

Education, 2013).


The report was widely criticised for the exclusion of

qualified behaviour analysts on the writing team and subsequent

erroneous and misleading description of behaviour analysis-based

interventions (Parents’ Education as Autism Therapists [PEAT],

2002).

Independent Review of Autism Services (Maginnis, 2008)

The “Maginnis review” was tasked to identify gaps in service

provision in NI, six years after the Task Group report and

consisted of a panel of professionals associated with autism

services in Health and Social Care as well as Education. In

contrast to the earlier Task Group Report it contained only nine

key recommendations that focused on increasing ASD service

provision and identified the need for consistent care pathways.

The lack of information and advice for parents was noted and it

was recommended this should be improved through integrating

“treatment and advice centres”, although the report did not

specified the kind of treatment or advice that should be made

available. The report drew attention to the need for consistent

statistical information both on the number of individuals


diagnosed with ASD, the services they were accessing, and the need

for effective inter-departmental and agency working, and raised

the possibility of legislation to enable this.

The Maginnis review again did not include any behaviour

analysts on the writing team and subsequently was heavily

criticised, e.g., Mattaini and 28 internationally recognised

behaviour analysts (2008) wrote: “In examining the Independent

Review, however, we are concerned about certain

mischaracterizations in the description of the science of behavior

analysis, which is in many areas the state of the art in the

treatment of autism spectrum disorders. Such inaccuracies could

have a detrimental impact on decision-making regarding financial

investment for service delivery, and thereby on ensuring the most

effective available treatment for a group that is commonly unable

to advocate for themselves …. We therefore strongly urge you to

seek informed, impartial reviews of the misrepresentations of

behavior analysis in the Independent Review document to ensure

that the human rights of this population and their families are

not compromised”.(Maittani et al. 2008, para.5)


The Maginnis review proposed there should be a substantial

financial commitment to ensure the delivery of its recommendations

and specifically identified budgetary needs of £1.75 million.

Department of Health, Social Services and Public Safety (DHSSPS)

took forward some of Maginnis’s recommendations with the

publication of the ASD Strategic Action Plans (2008 -2010) that

included the formation of a Regional Autism Spectrum Disorder

Network (RASDN) under the auspices of the Health and Social Care

Board (HSCB).

Regional Autism Spectrum Disorder Network (2009)

The Regional Autism Spectrum Disorder Network (RASDN) was

established as a multi-agency/multidisciplinary network, with a

reference group of parent/carers and individuals with ASD within

each Health and Social Care Trust and the overall Project Team,

whose role it was “to help shape the design of front line

services” (Health and Social Care Board, 2012a, p. 2). RASDN’s

aims were to ‘promote a “whole life” approach, which recognises

the importance of early intervention, provision of integrated


health and social care services and linkage with education and

other agencies as appropriate’ (p. 1).

The major outcomes of RASDN were the re-organisation and

integration of autism services within the Health and Social Care

Trusts, each of which now has a dedicated budget and ASD co-

ordinator, and the implementation of the following care pathway

documents:

1. Six Steps of Autism Care for Children and Young people in

Northern Ireland (Health and Social Care Board, 2011a);

2. Autism: A Guide for Families (Health and Social Care

Board, 2011b); and

3. Autism: Adult Care Pathway (Health and Social Care Board,

2012b).

While the first two documents are given to families at

diagnosis and are available on the individual Trust and Health and

Social Care Board (HSCB) websites, adult services remain

comparatively under-developed and the adult care document,

available only on the websites, is not as extensive in terms of

resources. Interagency/interdepartmental working is advised, but

not resourced or enforced.


While the RASDN documents identified the need for

interventions, however, there was no endorsement of ABA-based

early intervention and recommendations remained unspecified and

vague (HSCB, 2011b). “The decision in relation to the most

appropriate interventions to meet an individual’s assessed needs

falls within the remit of clinicians who take account of current

best practice guidance and the evidence base” (Poots, 2013 . p.WA

309).

Autism Strategy (2013-2020) and Autism Action Plan (2013-2016)

The Autism Act (NI) 2011 mandated the development of a cross-

departmental Autism Strategy (2013-2020) and consecutive 3-year

Autism Action Plans. The autism strategy development group was

lead by DHSSPS and a Research Advisory Committee and a cross-

departmental Prevalence Committee were set up to inform the

strategy group. The cross-departmental Autism Strategy (2013-2020)

and the first Autism Action plan (2013-2016) were launched in

January 2014. With regards to children, young people and family,

the focus is on joined up support for families, promotion of

awareness regarding available support services to families and


support for carers. There is no mention of the importance of early

intensive behavioural interventions or the need to ensure

evidence-based practice. Again, autism is defined as a “lifelong

disability” (p. 16). Furthermore, there is no mention of the

extensive national and international research and training in

autism conducted by either of the two local Universities. Clearly,

the Autism Strategy again missed the opportunity to bring ASD

interventions in Northern Ireland in line with international best

practice, ignored optimal outcomes data, and left decisions about

the quality of supports entirely up to individual clinicians

(Poots, 2013).

In sum, none of the reports or initiatives published in

Northern Ireland over the past 12 years clearly defined or

demanded evidence-based intensive early behavioural intervention.

Statutory bodies do not offer or promote EIBI or other ABA-based

interventions and instead refer parents who ask for ABA-based

interventions to a small parent-led local charity (Janes, 2014;

McCarroll, 2014). International research regarding evidence-based

best practice is entirely lost in translation.


Conclusions

There is ample research evidence of the effectiveness of EIBI and,

more generally, ABA-based interventions, with regards to clinical

outcomes for individuals with autism (Eldevik et al., 2009;

Virués-Ortega, 2010), social validity for families (Walsh, 2011),

as well as cost-benefits for society as a whole (Jacobson, Mulick,

& Green, 1998). Furthermore, research has shown the comparative

lack of effectiveness of other interventions that are widely

promoted in NI, such as TEACCH (Virues-Ortega, Julio, & Pastor-

Barriuso, 2013) or sensory integration therapy (Lang et al.,

2012). However, while this body of research seems to have guided

international legislation, policies, and practice guidelines,

particularly in the USA, Canada, and Australia, where ABA-based

intervention are endorsed at federal levels and Board Certified

Behaviour Analysts are recognised as professionals to carry out

and supervise programmes, in Northern Ireland and the rest of the

UK this research seems to have been lost in translation.

Since the publication of the first key report on Autism in

Northern Ireland ,the Task Group Report on Autism, (DENI, 2002),


autism awareness in Northern Ireland has risen significantly and

is now between 82% (Dillenburger , Jordan, McKerr, Devine, &

Keenan, 2013) and 92% (Stewart, 2008) and attitudes towards people

with ASD are increasingly accepting and positive (Dillenburger et

al., under review). Yet, effective evidence-based EIBI or other

ABA-based interventions are not yet endorsed. The most recent

chance to include international best evidence, i.e., the new

Autism Strategy (2014), again missed the opportunity to clearly

endorse international best practice. It seems that, despite the

fact that international research is generally published in

English, i.e., is easily accessible to a NI audience, the results

of this research are largely ignored. While parents in NI are

advocating for ABA-based interventions, e.g., O’Neill’s (2013)

parent-led petition for ABA gained 2200 signatories in less than a

month, the expectations of educational, health and social care

professionals of outcomes remain low, i.e., much lower than the

expectations of parents (Lamb, 2009).

There are many reasons for this state of play that would

require a full analysis, however one indication lies in the fact

that to date, behaviour analysts have been excluded from any of


the teams or committees who assess research and write reports in

the UK and Northern Ireland. Training of the authors of these

reports and other key professionals in the UK, such as clinical

and educational psychologists, speech and language therapists,

occupational therapists, teachers, and social workers does not

include even the basics of behaviour analysis. This situation

means that when ABA-based interventions are discussed in any of

the reports, these writing teams are working outside their area of

expertise (British Psychological Society, 2014) and this has led

to misrepresentation of ABA-based intervention (PEAT, 2002).

Unless these underlying problems are addressed and international

research evidence is embraced, Mandell’s concern will remain true:

We are paying for the costs of inaction and the costs of

‘inappropriate action.’ Social exclusion of individuals with

autism and intellectual disability, and exclusion of higher-

functioning individuals … are increasing the burden not only

on these individuals and their families, but on society as a

whole.(2012, para. 12)


Acknowledgements

Research reported here was supported by a grant from the Office of

the First and Deputy First Minister (OFMDFM), Northern Ireland.

Opinions reflect those of the author and do not necessarily

reflect those of the funding agency. The authors had no financial

or other conflicts of interest.

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Figure 1. NI policies, strategies, and reports relevant to individuals

with ASD and their families (2002-2013).

Autism specific

Education ns

HSC ns

Transitions/FE ns

Employment ns

Other departments ns

Academic ns

Ng/interagency groups ns

Cross-departmental /agency

0

5

10

15

20

25

15

5

20

93

14

49

6

Notes: ns = relevant, although not autism specific; HSC = Health &

Social Care; Ng = Non-governmental.