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 Spectrum DisorderKarola 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 risen dramatically over the past few decades (now

estimated at 1:50 children; Centers for Disease Control and Prevention [CDC], 2013). The estimated total

annual costs to the public purse in the United States is US$126 billion (Autism Speaks, 2012), with an

individual lifetime cost in the UK estimated between £3.1-4.6 million, depending on the level of functioning

(Knapp, Romeo, & Beecham 2009). The United Nation Convention for the Rights of Persons with

Disabilities (CRPD, 2006) has enshrined full and equal human rights, for example, for inclusion, education,

employment and there is ample evidence that much can be achieved through adequate support and early

intensive behavioural interventions (Fein et al., 2013). Not surprisingly, worldwide most Governments have

devised laws, policies, and strategies to improve services related to ASD, yet intriguingly, the approaches

differ considerably across the globe. Using Northern Ireland as a case in point, we look at relevant

Governmental documents and offer international comparisons that illustrate inconsistencies akin to a “post

code lottery” of services.

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:

* Corresponding author. Email: k.dillenburger@qub.ac.uk

2 K. Dillenburger et al.

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.

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

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

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

4 K. Dillenburger et al.

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).

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 5

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

6 K. Dillenburger et al.

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)

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 7

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

8 K. Dillenburger et al.

[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.

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 9

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

10 K. Dillenburger et al.

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).

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 11

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:

12 K. Dillenburger et al.

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.

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 13

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

14 K. Dillenburger et al.

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);

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 15

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).

16 K. Dillenburger et al.

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

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 17

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

18 K. Dillenburger et al.

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

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 19

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,

20 K. Dillenburger et al.

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-

Public Policies, Evidence-based Practice, and Autism Spectrum Disorder 21

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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36 K. Dillenburger et al.

Figure 1. NI policies, strategies, and reports relevant to individuals with ASD and their families (2002-

2013).

Autism sp

ecific

Educati

on ns

HSC ns

Transiti

ons/FE n

s

Employm

ent n

s

Other dep

artmen

ts ns

Academ

ic ns

Ng/inter

agency

groups n

s

Cross-

depart

mental

/agen

cy0

5

10

15

20

25

15

5

20

9

3

14

4

96

Notes: ns = relevant, although not autism specific; HSC = Health & Social Care; Ng = Non-governmental.