use of early intervention for young children with autism spectrum disorder across...

Use of early intervention for young children with autism spectrum disorder across Europe

Erica Salomone, Stepanka Beranova, Frederique Bonnet-Brilhault, Marlene Briciet Lauritsen, Magdalena Budisteanu, Jan Buitelaar, Ricardo Canal-Bedia, Gabriella Felhosi, Sue Fletcher-

Watson, Christine Freitag, Joaquin Fuentes, Louise Gallagher, Patricia Garcia Primo, Fotinica Gliga, Marie Gomot, Jonathan Green, Mikael Heimann, Sigridur Loa Jonsdottir,

Anett Kaale, Rafal Kawa, Anneli Kylliainen, Sanne Lemcke, Silvana Markovska-Simoska, Peter B. Marschik, Helen McConachie, Irma Moilanen, Filippo Muratori, Antonio Narzisi, Michele Noterdaeme, Guiomar Oliveira, Iris Oosterling, Mirjam Pijl, Nada Pop-Jordanova,

Luise Poustka, Herbert Roeyers, Bernadette Roge, Judith Sinzig, Astrid Vicente, Petra Warreyn and Tony Charman

Linköping University Post Print

N.B.: When citing this work, cite the original article.

Original Publication:

Erica Salomone, Stepanka Beranova, Frederique Bonnet-Brilhault, Marlene Briciet Lauritsen, Magdalena Budisteanu, Jan Buitelaar, Ricardo Canal-Bedia, Gabriella Felhosi, Sue Fletcher-Watson, Christine Freitag, Joaquin Fuentes, Louise Gallagher, Patricia Garcia Primo, Fotinica Gliga, Marie Gomot, Jonathan Green, Mikael Heimann, Sigridur Loa Jonsdottir, Anett Kaale, Rafal Kawa, Anneli Kylliainen, Sanne Lemcke, Silvana Markovska-Simoska, Peter B. Marschik, Helen McConachie, Irma Moilanen, Filippo Muratori, Antonio Narzisi, Michele Noterdaeme, Guiomar Oliveira, Iris Oosterling, Mirjam Pijl, Nada Pop-Jordanova, Luise Poustka, Herbert Roeyers, Bernadette Roge, Judith Sinzig, Astrid Vicente, Petra Warreyn and

http://twitter.com/?status=OA%20Article:%20Use%20of%20early%20intervention%20for%20young%20children%20with%20autism%20spectrum%20disorder%20acros...%20http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-127454%20via%20@LiU_EPress%20%23LiU

Tony Charman, Use of early intervention for young children with autism spectrum disorder across Europe, 2016, Autism, (20), 2, 233-249. http://dx.doi.org/10.1177/1362361315577218 Copyright: SAGE Publications (UK and US)

http://www.uk.sagepub.com/home.nav

Postprint available at: Linköping University Electronic Press

http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-127454

http://dx.doi.org/10.1177/1362361315577218

http://www.uk.sagepub.com/home.nav

http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-127454

USE OF INTERVENTION FOR CHILDREN WITH ASD IN EUROPE

1

Use of early intervention for young children with autism spectrum disorder across

Europe

Erica Salomone1, Štěpánka Beranová2, Frédérique Bonnet-Brilhault3, Marlene Briciet

Lauritsen4, Magdalena Budisteanu5, Jan Buitelaar6, Ricardo Canal-Bedia7, Gabriella

Felhosi8, Sue Fletcher-Watson9, Christine Freitag10, Joaquin Fuentes11, Louise Gallagher12,

Patricia Garcia Primo13, Fontinica Gliga14, Marie Gomot3, Jonathan Green15, Mikael

Heimann16, Sigridur Loa Jónsdóttir17, Anett Kaale18, Rafal Kawa19, Anneli Kylliainen20,

Sanne Lemcke4, Silvana Markovska-Simoska21, Peter B Marschik22, Helen McConachie23,

Irma Moilanen24, Filippo Muratori25, Antonio Narzisi25, Michele Noterdaeme26, Guiomar

Oliveira27, Iris Oosterling6, Mirjam Pijl, Nada Pop-Jordanova21, Luise Poustka28, Herbert

Roeyers29, Bernadette Rogé30, Judith Sinzig31, Astrid Vicente32, Petra Warreyn29 and Tony

Charman1.

1King’s College London, UK, 2Charles University and University Hospital Motol, Czech Republic, 3Université François Rabelais de Tours, France, 4Aarhus University Hospital, Denmark, 5Titu Maiorescu University, Romania , 6Radboud University, The Netherlands , 7Universidad de Salamanca, Spain, 8Budapest and Kispest Child Mental Health Institute, Hungary, 9University of Edinburgh, UK, 10Goethe-Universität Frankfurt am Main, Germany, 11Policlinica Gipuzkoa, Spain, 12Trinity College Dublin, Ireland , 13Rare Diseases Research Institute (IIER) of the National Institute of Health of Spain (IIER-NIH Carlos III), Spain, 14University of Bucharest, Romania, 15Booth Hall Children’s Hospital, UK, 16Linköping University, Sweden, 17State Diagnostic and Counselling Centre, Iceland, 18Oslo University Hospital, Norway, 19University of Warsaw, Poland , 20University of Tampere, Finland, 21Macedonian Academy of Sciences and Arts, Macedonia, 22Medical University of Graz, Austria, 23Newcastle University, UK , 24Oulu University Hospital and University of Oulu, Finland, 25IRCCS Stella Maris Foundation, Italy 26Josefinum, Germany, 27Centro Hospitalar e Universitário de Coimbra, Portugal, 28University of Heidelberg, Germany, 29Ghent University, Belgium, 30Université de Toulouse – Le Mirail, France, 31LVR-Klinik Bonn, Germany, 32Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal

Corresponding author:

Erica Salomone, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, 16 De Crespigny Park, London SE5 9AF, UK. Em ail: [email protected]


2

Abstract

Little is known about use of early interventions for autism spectrum disorder (ASD) in

Europe. Parents of children with ASD aged 7 years or younger (N=1680) were recruited

through parent organisations in 18 European countries and completed an online survey about

the interventions their child received. There was considerable variation in use of

interventions and in some countries more than 20% of children received no intervention at

all. The most frequently reported treatments were speech and language therapy (64%) and

behavioural, developmental and relationship based treatments (55%). In some parts of

Europe, use of behavioural, developmental and relationship-based interventions was

associated with higher parental educational level and time passed since diagnosis, rather than

with child characteristics. These findings highlight the need to monitor use of treatment for

children with ASD in Europe in order to contrast inequalities.

Keywords: Autism, Europe, Intervention, Use of early intervention.


3

Introduction

Autism spectrum disorder (ASD), characterised by impaired social communication and

interaction and by restrictive patterns of behaviours and interests, affects approximately 1%

of children (Baird et al., 2006; CDC, 2014). Cognitive impairment, psychiatric disorders and

behavioural problems commonly co-occur with ASD (Lai, Lombardo, & Baron-Cohen,

2014). The complexity of the clinical presentation therefore requires early and appropriate

intervention to promote positive outcomes for children and families.

There is a growing body of evidence from randomised controlled trials (RCTs), that best

protect against bias, reporting promising results of the efficacy of early and intensive

behavioural intervention (see reviews: Narzisi, Colombi, Balottin, & Muratori, 2013; Warren

et al., 2011) as well as of developmental or relationship-based interventions delivered by

therapists or teachers (Dawson et al., 2010; Kaale, Smith, & Sponheim, 2012; Landa,

Holman, O’Neill, & Stuart, 2011; Pajareya & Nopmaneejumruslers, 2011) and parents (J.

Green et al., 2010; Kasari et al., 2014; for a meta-analysis see Oono, Honey, & McConachie,

2013). A number of countries in Europe have acknowledged these encouraging findings and

recommend early intervention within national guidelines for autism (among others, France:

HAS, 2012; UK: NICE, 2013; The Netherlands: HCN: 2009). However, little is known about

the actual use of ASD-related interventions in communities across Europe.

Several studies have reported on the use of intervention for young children in many

countries, such as in the UK (Barrett et al., 2012; Cassidy, McConkey, Truesdale-Kennedy,

& Slevin, 2008), France (Rattaz et al., 2012), Israel (Raz, Lerner-Geva, Leon, Chodick, &

Gabis, 2013) and the United States (Ruble & McGrew, 2007; Thomas, Morrissey, &

McLaurin, 2007). However, because of the different focus of these studies (service costs,

parental satisfaction, out-of-pocket expenditure) or the characteristics of the research site


4

(e.g., a predominantly TEACCH oriented State), comparison of intervention use across

countries is difficult. This is due to several reasons: parents were sometimes asked about

contacts with various professionals rather than about the use of different types of

intervention; they were not systematically asked about all possible approaches; or the samples

are unlikely to be representative of the wider community. Three American groups conducted

surveys of use of intervention that included respondents from other countries, however the

vast majority of participants were US residents (Bowker, D’Angelo, Hicks, & Wells, 2011;

Goin-Kochel, Myers, & Mackintosh, 2007; V. A. Green et al., 2006). The Green et al. (2006)

study reached 552 families through the Autism Society of America chapter branches and

found that families used on average seven different interventions, and while speech and

language therapy was the most commonly reported intervention, the number of therapies used

varied as a function of the child's age and severity of disability within the autism spectrum.

The Goin-Kochel et al. (2007) study replicated these findings on another sample (N = 479)

recruited via similar routes. In the Bowker et al. (2011) study (n=970), interventions based

on ABA approaches were the most commonly reported interventions (37%), followed by

‘physiological interventions’ (including for example sensory integration and occupational

therapy) and by speech and language therapy, music therapy and osteopathy, grouped by the

authors in a “standard therapies” category.

While these studies provide some information on the use of interventions for children

with ASD in Northern America, a comprehensive description of use of intervention in Europe

is lacking. Moreover in all studies, except the two British studies and the Goin-Kochel et al.

(2007) study, data for pre-schoolers were not separated out when children older than 7 years

were included in the sample; this makes the interpretation of the findings difficult as the

needs of children and young people with ASD change with development.


5

A separate but related issue is that of child and family factors associated with use of

intervention, as we know that parents often report difficulties in identifying and accessing

relevant services and professionals (Siklos & Kerns, 2006). Previous research in the US has

found that ethnicity and parental educational level were significant predictors of receiving an

early diagnosis (Mandell et al., 2009; Shattuck et al., 2009) and accessing services (Liptak et

al., 2008; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007); however differences in

service use by ethnicity or parental education were not found in the UK (Barrett et.al. 2012;

Cassidy et. al. 2008) and not analysed in the French study (Rattaz et al., 2012). Parents with

a higher income and educational level may be better equipped to know about, advocate for

and access interventions for ASD.

To promote strategies and mechanisms to collect and exchange information on ASD,

the European Commission specifically included ASD in its 2003-2008 and subsequent

public-health work plans. With a similar aim, in 2010 the European Science Foundation

funded the “ESSEA - Enhancing the Scientific Study of Early Autism” COST1 network,

composed of over 80 scientists from 23 European countries. The COST ESSEA network had

the objective to advance the pace of discovery about the earliest signs of autism (for example

studying infants at risk: Bölte et al., 2013); to combine techniques from cognitive

neuroscience with those from the clinical sciences; and to review the state of art of early

identification (García-Primo et. al. 2014) and intervention (McConachie et. al. 2014)

practices in Europe.

Obtaining a detailed picture of amount and type of intervention received in Europe is

important to inform the decisions of policy makers, both at a national and European level, in

relation to funding of services and training of professionals. This is particularly relevant for

1The European project COST (Cooperation in Science and Technology) is an intergovernmental framework that supports the coordination of nationally-funded research on a European level.


6

early childhood, in consideration of the evidence of greater plasticity and susceptibility to

change in that age. The current study therefore used the ESSEA network to conduct a multi-

country survey on use of early intervention for children with ASD across Europe.

Our aim was to describe the current use of behavioural, developmental and

psychosocial intervention for children with ASD aged 7 or younger in 20 European countries.

Specifically, our objectives were: (a) to examine whether the type and amount of intervention

received was a function of area of residency in Europe and (b) to examine whether child

characteristics (age, gender, verbal ability), time since diagnosis and parental educational

level were associated with use of intervention, both at a European and a regional level.

Methods

Ethical approval was given by the Research Ethics Committee of the Faculty of Children and

Learning, Institute of Education, London, UK. Parents provided informed consent before

completing the survey (IOE/ FPS 385).

Survey development

The survey, which asked about current use of intervention (type and number of hours per

week) received at home, school and clinic, was developed over three phases each involving

iterations within the COST-ESSEA international network. Initially, a list of interventions,

therapy approaches and aids was drawn from previous literature (V. A. Green et al., 2006)

and existing autism-related web resources (Research Autism:

www.researchautism.net/alphabeticlist). Subsequently, branded interventions not available in

Europe (e.g. Giant Steps) were dropped. In this phase it was acknowledged that therapy

programs with a very similar background are available with different names in different

countries, and also that parents are not always aware of the theoretical approach underlying a


7

specific program. Therefore, each question about a broader category of interventions (e.g. “Is

your child currently receiving a behavioural intervention?”) was always accompanied by

examples of specific programs that could have been more familiar to the parent (e.g.

“Applied Behaviour Analysis (ABA)”, “Pivotal Response Training (PRT)”, etc.). The

examples were specific, when possible, to each country. Finally, a question about using

“other interventions” was included in the survey to ensure capturing other less defined

approaches not included in the other categories mentioned. Parents were then asked to specify

the nature of the intervention by selecting one or more descriptions (“other educational

intervention”, “other psychological intervention", “social skills training”, “other type”) or the

option “I don’t know”. For each type of intervention in the survey, parents were asked to

report the number of hours of intervention their child/they currently received per week.

Parents were explicitly asked to consider all settings where the child received the treatment,

and to report on all sessions delivered at home, in clinics, or in school. The total hours of

total school attendance were not collected.

To take part in the survey, parents had to answer “yes” to the question “Has your

child received any of the following diagnoses?” followed by a listing of all diagnostic

categories for ASD in the DSM-IV-TR and ICD-10 (which were the diagnostic manuals in

use in Europe at the time of the study). General background information on respondents was

also gathered: relationship to child (mother/father/other) and educational level (below high

school diploma, high school diploma, bachelor, master/postgraduate). The educational level

was collapsed for analysis into the following two categories: low educational level (up to

high school diploma) and high educational level (bachelor and master/postgraduate). To

comply with the relevant legislation on cross-national sharing of sensitive personal data in

some of the participating countries, parents were asked to report on the country of residency

but data on nationality and ethnicity were not collected. Respondents were asked to indicate


8

the age of the child at the time of receiving an ASD diagnosis. Respondents were also asked

to describe the child’s verbal ability by selecting one of five options (does not talk; uses

single words; uses two- or three-word phrases; uses sentences with four or more words; uses

complex sentences). Exemplars of each category were given to help respondents. For the

purposes of analysis, the options were collapsed into the following two categories: low verbal

ability (non-verbal or single words speech), and phrase speech (simple and complex phrases).

Before launching the survey, the questionnaire was piloted with parents approached

through the main national parent support association in the UK (N=8) and through personal

contacts of clinicians in Italy (N=2). Parents were asked to provide feedback on the survey’s

content, format and accessibility. All parents reported that the survey was easily accessible

and the questions clear and comprehensible. Based on the suggestion of some parents, the

possibility to select a generic intervention if the nature of the approach was not known was

further highlighted in the initial instructions. The final set of questions (including a section

on medication and complementary and alternative medicine, not considered for this study)

was then translated and adapted by one or two researchers for each of the countries involved

in the project. The researchers in each of the countries were fluent in English and expert in

the field of early autism. This process involved using the official translation of named

programmes, where available in each country. Each translation was then uploaded onto a web

platform and access to the survey was made available via nation-specific web links, each

bound to an online dataset provided by the survey platform. A copy of the English version of

the survey is reproduced in the Appendix.

Recruitment

The survey was addressed to parents of children with ASD aged 7 or younger and living in 20

countries involved in the COST-ESSEA network: Austria, Belgium, Czech Republic,


9

Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Netherlands, Norway,

Poland, Portugal, Romania, Spain, Sweden, The Former Yugoslav Republic of Macedonia

and the United Kingdom. Researchers and clinicians in the COST-ESSEA network promoted

the recruitment of the participants through national parents’ associations who advertised the

link to the web-based survey via posts on their official websites and social network pages,

where available. If previous consent to receiving communications from the associations had

been given, an email message was sent from the associations to their members’ mailing list.

Parents were also recruited via autism-related websites and social networks and through the

researchers’ professional contacts. In The Former Yugoslav Republic of Macedonia,

participants were recruited through the Paediatric Clinic of Skopje as parents’ associations

did not exist and the survey was completed on paper for separate data entry. A decision was

made to exclude Austria and Sweden from the study, as the number of participants recruited

via all recruitment channels within the planned timeframe was too low (Austria: n=1;

Sweden: n=5). For this reason the final dataset included information on 18 countries. Two

initial questions were designed to filter out participants who did not meet the inclusion

criteria: to be a parent/caregiver of a child a) with ASD; and b) aged 7 or younger. The

survey was open for 45 days. When this period expired, the datasets were downloaded from

the survey platform as SPSS files and merged into a single dataset for data analysis purposes.

--- Table 1 about here ---

Data analysis

The countries involved in the study were grouped in European regions, as defined by the

official classification of the United Nations (UN, 2006): Western Europe (Belgium, France,

Germany, The Netherlands), Northern Europe (Denmark, Finland, Iceland, Ireland, Norway,


10

United Kingdom), Eastern Europe (Czech Republic, Hungary, Poland, Romania) and

Southern Europe (Italy, Macedonia, Portugal, Spain). Descriptive statistics were used to

report on type and amount of intervention used in the total sample, in the four European

regions and in each country separately.

To explore the determinants of use of intervention and amount of intervention

received in the total sample and in the four European regions, two specific categories of

intervention (speech and language therapy and a summary category including behavioural,

developmental and relationship based interventions) were selected as dependent variables.

These two types of intervention were selected both as they were the most frequently used in

the total sample and in consideration of their conceptual relevance to ASD.

To compare the effect of European region of residence on amount of intervention

received, 3 one-way between subjects ANOVAs were conducted with the following

dependent variables: 1) number of total hours per week of any intervention received, 2)

number of hours per week of behavioural, developmental and relationship-based

interventions, 3) number of hours per week of speech and language therapy received. Since

the assumption of homogeneity of variance was not met for these data, we used the obtained

Welch’s adjusted F ratio.

To investigate the association of child and parental characteristics with use of

intervention, we conducted logistic regressions for three primary outcomes (use of any

intervention; use of behavioural, developmental and relationship-based interventions and use

of speech and language therapy). The predictors in each model were: child’s gender, verbal

ability, age in months, time passed since diagnosis and parental educational level. The three

logistic regression models were first run for the total sample and then for each of the four

European regions.


11

Results

Participants

A total of 1,680 families from 18 European countries participated in the study participation

by European regions was balanced (Western Europe: n= 473; Northern Europe: n= 341;

Eastern Europe: n= 354; Southern Europe: n= 512). In 83% of cases mothers completed the

survey. Overall, the educational level of respondents was high, although varied across

countries (63% of total sample had a degree or a postgraduate qualification; range: 36-93%).

In total, 83% of children with ASD were male, and the mean age was 58.18 months (SD=

14.04, range 21-83). Children’s reported ability to use at least phrase-speech was 63% in the

total sample and ranged from 24% to 91% across countries (Table 2).


Use of interventions

The majority of parents (n = 1,529, 91%) reported using at least one type of intervention (M

= 9.44 hours/week, SD = 11.95; Median = 5; IQR = 2 to 11). However 9% (n = 151) reported

no use of intervention. The number of parents using any treatment in Northern Europe

(82.1%) was significantly lower than in Western, Eastern Europe and Southern Europe (see

Tables 3 and 4). The percentage in Western and Eastern Europe was significantly lower than

in Southern Europe. The number of parents reporting not currently using any treatment

ranged from 1.3% (Poland) to 29% (Ireland); in six countries this proportion was >10% (The

Netherlands, Denmark, Ireland, The United Kingdom, Czech Republic, Macedonia). In the

total sample, children who didn’t use any type of intervention did not differ by age (t(1689) =

-.591, p=.554), gender (χ²(1) = .068, p = .449), or verbal ability (χ²(1) = 1.025, p = .178.)


12

from children using some sort of intervention. However, there were significantly more

parents with a lower educational level in the group of those not using intervention (χ²(1) =

20.457, p < .001), as well as more children who had received a diagnosis less than a year

prior to survey completion (χ²(1) = 20.457, p = < .001).

Speech and language therapy was the most widely used intervention (64% of total

sample) with a uniform pattern of use by European regions, with the exception of Northern

Europe (46%) where reported use was significantly lower than in Western (68%), Eastern

(68%) and Southern Europe (70%). Behavioural, developmental and relationship-based

interventions were used in 45% of the sample. The proportion of parents reporting using such

treatments was significantly higher in Southern Europe (54%) than in Western (40%),

Northern (38%) and Eastern Europe (47%). Reported use in Western and Northern Europe

was significantly lower than use in Eastern Europe (see Table 4).


ANOVA models were performed for three dependent variables: total hours per week

of any intervention, hours per week of behavioural, developmental or relationship-based

interventions and hours per week of speech and language therapy (Table 5). There was a

significant effect of European region of residency on total number of hours of intervention

used, however the effect size was small. Post hoc comparisons using the Bonferroni test

indicated that the mean hours of intervention used by children living in Western Europe (M =

6.94, SD = 11.07) was significantly lower than the mean hours used by children living in

Northern Europe (M = 10.26, SD = 13.09) and Eastern Europe (M = 9.79, SD = 12.53).

A significant effect of region was also found on number of hours of behavioural,

developmental or relationship-based interventions with a medium effect size as well as on

number of hours of speech and language therapy, where the effect size was small. For the


13

behavioural, developmental or relationship-based interventions, post hoc comparisons

indicated that the mean hours used by children living in Northern Europe (M = 5.84, SD =

10.37) was significantly higher than the mean hours used by children living in Western

Europe (M = 2.91, SD = 7.51), Eastern Europe (M = 3.67, SD = 7.1) and Southern Europe

(M = 3.51, SD = 6.87). For speech and language therapy, post hoc comparisons indicated

that the mean hours used by children living in Western Europe (M = .93, SD = 1.60) and

Northern Europe (M = .54, SD = 1.12) were significantly lower than the mean hours used by

children living in Eastern Europe (M = 1.74, SD = 3.50) and in Southern Europe (M = 1.52,

SD = 1.86).


Predictors of use of intervention

Logistic regression models were performed for three outcomes: use of any intervention, use

of behavioural, developmental or relationship-based interventions and use of speech and

language therapy (Table 6). The models were run first in the total sample and were then

repeated on four subsamples based on the European regions. All models χ² statistics were

significant (ps ranged < .001 – .048), except for the model predicting use of any intervention

in Northern Europe (p = .187), which was therefore rejected. The Hosmer & Lemeshow’s

goodness-of-fit test was not significant (hence indicating well-fitting models) for all

remaining logistic regressions except for the model predicting use of any intervention in the

whole sample (p = .041), and this model was rejected too. Nagelskerke’s R2 for the

remaining models ranged .04 – .13, which is an indication that several other relevant

variables had not been included in the models. Table 5 reports the odds ratios and 95% CIs

for the predictors and the models’ statistics.



14

Use of any intervention

In Southern Europe, controlling for child age, gender and verbal ability and for time passed

since diagnosis, a high parental education level significantly increased the odds for the child

to use at least one type of intervention (OR = 4.54, p = .004; 95% CI [1.61,12.84]). No

associations between the predictors and use of at least one type of intervention were found for

the other European regions. Time passed since diagnosis and parental educational level were

found to be significantly associated with use of any intervention in the total sample; however

the Hosmer & Lemeshow’s goodness-of-fit test of the model indicated that the model’s

estimates did not fit the data at an acceptable level.

Use of behavioural, developmental or relationship-based interventions

In the total sample, controlling for child age, gender, verbal ability and time passed since

diagnosis, a high parental educational level significantly increased the odds for the child to

use behavioural, developmental or relationship-based interventions (OR = 1.54, p = < .001;

[1.25, 1.89]). The same effect was found for Eastern (OR = 2.21, p = < .001; [1.41, 3.47])

and Southern Europe (OR = 1.67, p = .006; [1.16, 2.40]), but not for Western and Northern

Europe. A longer time passed since diagnosis (> 1 year) was also associated with a

significant prediction for use of behavioural, developmental or relationship-based

interventions in the total sample, but when examining the regional subsamples the prediction

was significant in Southern Europe only (OR = 2.13, p = .002; [1.33, 3.42]).

Among child characteristics, verbal ability was a significant predictor in the total

sample (OR = .72, p = .003; [58, .89]) and in Western Europe only (OR = .52, p = .004; [.34,

.81]), with non-verbal children and children with single words at an increased likelihood to

use of intervention compared to those with phrase speech. Child age was a significant

predictor for use of behavioural, developmental or relationship-based interventions in the


15

total sample (OR = .98, p <.001; [.97, .98]) and in Northern Europe (OR = .95, p < .001; [.93,

.97]), with younger children at an increased likelihood to be using intervention.

Use of speech and language therapy

Time passed after receiving the diagnosis was the only significant independent factor for use

of speech and language therapy in the total sample, with children diagnosed more than one

year before the survey more likely to use it (OR = 2.06, p < .001; [1.63, 2.58]). The same

effect was found in Western (OR = 1.83, p = .006; [1.19, 2.81]), Eastern (OR = 2.07, p =

.006; [1.23, 3.49]) and Southern Europe (OR = 2.31, p < .001; [1.42, 3.76]), but not in

Northern Europe.

Discussion

The aim of this study was to obtain an overview of use of intervention per week among

parents of young children with ASD across 18 European countries. The survey, the largest

conducted worldwide (n = 1,680), is the first to report data on a European sample. The

recruitment method, an online survey distributed via national parents associations, was

selected to reach the largest possible number of families in a systematic fashion across

Europe and therefore maximise the representativeness of the sample. A number of steps were

undertaken to minimise the potential bias associated to the translation and adaptation of the

survey in 18 different languages, including using local terminology to describe treatments,

where available, and the employment of consensus methods in the group of expert clinicians

and researchers involved in the development of the questionnaire.

It has identified a diverse pattern of use of intervention across Europe both in terms of

the use of any intervention and in the amount of intervention received. It has also

demonstrated that use of intervention is associated with parental educational level as well as


16

child characteristics. Moreover, this study identified for the first time differential patterns of

therapy utilisation in the West, North, East and South areas of Europe. These regional

groupings, codified as such in the United Nations geoscheme, are not simply defined by

geographical proximity, but are also characterised by similar economic and cultural

background. Our approach allowed us to identify patterns of intervention use for children

with autism that can potentially inform health and economic policies, now increasingly

applied at a supranational level such as in programs promoted within the European Regional

Development Fund regulation (OJ L 347, 20.12.2013).

A number of relevant findings emerged. First, almost 1 in 10 parents who took part in

the survey reported that their child was not currently receiving any type of intervention. At a

country level there was large variation in use of any intervention with more than 10% of

children in six countries using no interventions and more than 20% of children in three

countries. This figure is much lower than the rate reported by Bowker et al. (2011), the only

study reporting on use of any type of intervention (23% in North America and 43% in a

smaller sample, n = 63, from Europe and other background). This and other differences in

our results might be due to sampling bias and the different recruitment methods employed in

our and other studies, as well as availability of different interventions. However, it should

also be noted that we enquired about a greater range of interventions (for example, parent

training was not included in the Bowker et. al. survey) in a much larger sample.

Children not receiving any type of intervention did not differ by age, gender or verbal

ability, but in this group there were significantly more children whose parent had a lower

educational level and more children who had been diagnosed less than a year before survey

completion. Nonetheless, the overall estimated probability of not using any type of

intervention based on child and parental characteristics considered together did not accurately

fit the data at a European level. Notably though, when examining the estimates by European


17

regions we identified a strong association of parental educational level with use of

intervention in Southern Europe only, where children whose parent had a lower educational

level were four times less likely to use any intervention. This finding is particularly striking

considering that the parents who took part in our survey had, on average, a significantly

higher educational level than the general population. This suggests that in the general

population, an even wider proportion of children with ASD might not be using any

intervention.

In terms of crude amount of total hours of intervention received, children in Western

Europe received overall significantly less hours of intervention than children in Northern

Europe and Eastern Europe. In line with previous findings in the US (Goin-Kochel et al.,

2007; V. A. Green et al., 2006), in our sample speech and language therapy stood out as the

most common intervention for the majority of children in all Europe (range: 68-70%), with

the exception of Northern Europe (46%). While speech and language therapy was used by a

smaller number of children in Northern Europe, the overall amount received in that region

was comparable to the amount received in Western Europe and only slightly less than in

Eastern and Southern Europe (between 1 and 2 hours less). No associations between child or

parental characteristics and use of speech and language therapy was found in Northern

Europe, however in the rest of Europe children who had been diagnosed at least one year

prior to survey completion were twice more likely to use this intervention. These results are

not surprising given that speech and language therapists are usually part of paediatric or

psychiatric services within the national health systems in some countries and/or part of school

and education system in others. We did not collect information on the providers of

intervention, but it is reasonable to presume that in most cases speech and language therapy

had been provided by the respective national health systems. This may explain why speech

and language therapy is consistently reported as the most frequently used intervention in


18

different studies (Barrett et al., 2012; Goin-Kochel et al., 2007; V. A. Green et al., 2006).

Alternatively, this might reflect more the parents’ choices rather than availability of the

services: language difficulties may be amongst the first concerns that parents have or they

may be identified as priority targets for intervention following diagnosis. The association of

time passed since the diagnosis with use of speech and language therapy might represent

waiting lists or other systemic factors, such as bureaucracy, that delay use of intervention. In

some countries speech and language therapy is also provided in schools or other day care

settings and, although parents were instructed to include all settings where the child might

have received intervention while completing the survey, we cannot exclude the possibility

that in some countries parents may not have reported using speech and language therapy

because they considered it as an integral part of the school curriculum. This might have

influenced our results, particularly the finding that speech and language therapy was less used

in Northern Europe.

A different pattern emerged when considering the use of behavioural, developmental

and relationship-based interventions. Behavioural interventions were used by a third of the

sample overall, with equal distribution by European region but much wider range by country.

Developmental and relationship-based approaches were more commonly used in Southern

and Eastern Europe. All these treatments, combined together, represented the second most

used type of intervention (55% in the total sample). The proportion of children receiving

these interventions was fairly similar across Europe (Southern 54%, Eastern 47%, Western

Europe 40%, Northern Europe 38%) but on average children in Northern Europe received

between 8 and 9 more hours per week than the children in the rest of Europe (for those using

the intervention, the mean reported hours were 15 in Northern Europe and between 6 and 8

for the rest of Europe).


19

Moreover, we identified some differences by region of residence in the factors

predicting use of these interventions. Child characteristics predicted use of behavioural,

developmental and relationship-based interventions in Northern and Western Europe:

younger children and children who had not developed phrase speech, respectively, more

likely to be using such interventions in those regions of Europe. However, a higher parental

educational level predicted increased likelihood of using such interventions in Eastern Europe

and in Southern Europe; in the latter, time passed since the diagnosis was also an independent

predictor of use of intervention. The available data cannot tease out the nature of the

associations between child characteristics and use of intervention in Western and Northern

Europe; for example, this might be due to services prioritising younger or more impaired

children, or parents of such children might be more motivated to use specific interventions.

As far as Southern and Eastern Europe are concerned instead, the association of parental

educational level with use of behavioural, developmental and relationship-based interventions

(but not to speech and language therapy) regardless of children’s needs might be an

indication that these interventions are not provided by public national health systems and

have to be found and paid directly by the families. Educational level is in fact a common

proxy for socioeconomic status (SES) in literature and its relation with occupational status

and income is well-established (Bradley & Corwyn, 2002). Similarly, in a US sample of 70

parents of children with ASD aged 6 years or younger enrolled in a parent advocacy group,

parental educational attainment predicted higher service utilization (Siller, Reyes, Hotez,

Hutman, & Sigman, 2014). Our study replicates this finding of a significant association of

parental educational level with use of intervention on a non-US large-scale sample;

additionally, our study suggests that, at least in Europe, this effect might vary by area of

residence. The presence of comorbid disorders is likely to influence intervention usage, but

we did not enquire about comorbidities.


20

In the absence of systematic information on differences and similarities in national

health and educational policies across Europe, it is not possible to speculate on which might

be the most influential factors driving the differences in service use we found. However, our

finding that in Southern and Eastern Europe children of individuals with a lower educational

level had considerably fewer chances of using interventions suggests per se that there are

health inequalities in Europe in respect to intervention for ASD. This is something that

policy makers in Europe, both at a national and a Union level, need to be made aware of.

Furthermore, finding such an effect in this highly educated sample raises the possibility that

the gap in terms of use of intervention between richer and poorer sectors of society in Eastern

and Southern Europe might be even wider in the general population.

While there is scientific consensus over the fact that children with ASD should

receive individualised, multi-dimensional and multi-disciplinary interventions, the reality is

that in our survey significant parts of the population report no or limited use of therapy.

Whether this is because some parents have few opportunities to know how to access

behavioural, developmental and relationship-based interventions, or whether such

interventions are generally not publicly funded and hence available to families only via their

own funds, considerable policy and service development is required across Europe to ensure

that communities are consistent with the rights of children with disabilities to access health

and education (UN, 2007). More research is needed to further explore the role of socio-

economic factors in use of interventions, and whether a similar pattern of is found in other

parts of the world.

Limitations and future directions

Several limitations of the study need to be acknowledged, many shared by previous research

conducted on this subject. The recruitment method chosen (online survey distributed by


21

parent associations) might have been prone to selection bias, as research has shown that

parents of children with autism involved in support groups are likely to have a relatively high

income and educational level (Mandell & Salzer, 2007), and that access to internet in Europe

is still a function of socio-demographic characteristics (Vicente & López, 2011). Our sample

was in fact characterised by an unusually high educational level: 63% of respondents of our

survey (for the vast majority women) reported having a graduate or post-graduate educational

level. Data from the European Commission on tertiary education attainment in females for

the year when the survey was completed (2012) show that only 40% of European women in

the age range 30-34 have an education level above secondary schooling (Eurostat, 2014).

While this is a limitation shared by previous studies (e.g. in the V. Green et. al. study 88% of

the sample had an educational level beyond high school), this may limit the generalisability

of our results to the European population. Moreover, since recruitment was conducted

locally by each national association, differences in the outreach of each organisation might

have influenced sampling and, although relatively uniform at a regional level, sample sizes at

a country level varied considerably. Critically, we do not know how representative the

parents who responded to our survey were of service utilisation more generally within each

community, and whether in some countries certain sectors of the population were particularly

underrepresented. It is likely that parents enrolled in parents’ associations are more active

and successful in seeking and accessing intervention. However, while this recruitment

strategy was potentially bound to bias, it allowed us to reach a large number of families in a

wide range of countries, making the present study the largest conducted to date on the topic,

and the first providing systematic data for Europe.

Our study was also limited by the use of cross-sectional data, which do not allow

teasing out whether our results represent an age or cohort effect influenced by economic

contingencies in Europe. Furthermore, although educational level is a common proxy for


22

SES, future studies needs to examine whether the present results hold also for other

indicators, such as income or occupation. The interpretation of our finding has also been

limited by the lack of information on the type and amount of services available publicly via

the national health systems in each country, as opposed to privately accessed interventions.

In addition, it was not possible to separate out the contexts where intervention was provided,

particularly in respect to intervention provided in school or day care settings, and this may

have limited the interpretation of our findings. While there is some evidence of lack of

uniformity in the public provision of services for children with disabilities across Europe

(Ballesteros, Jurkiewicz, & Meurens, 2013), more detailed cross-national comparisons of

health and educational systems, which would have allowed us to better interpret our findings,

are not available. Data from existing and future international cooperation programs are

needed to better understand and address possible inequalities in use of intervention for

autism. Further EU initiatives to strengthen the scientific cooperation among European

countries are needed in order to conduct trans-European studies that can employ more

resource-intensive recruitment methods that are likely less prone to selection bias and can

contribute to overcome the limitations of the present study and previous research on the topic.

Finally, reliance on parent report in absence of direct assessments places a limitation

on these findings in relation to severity of symptoms and behavioural characteristics.

Furthermore, no attempt was made to collect information on additional determinants of

service use such as co-occurring conditions. Future prospective studies are needed to

understand the patterns of intervention use in childhood taking into account the educational

as well as the clinical settings where intervention is provided. To keep the survey to a

minimum and maximise completion rate, we chose not to directly enquire about why parents

did or did not use certain interventions. In retrospect, the the availability of such direct

information would have been very valuable to interpret the variability found across regions in


23

intervention usage. In future studies, parents should be explicitly asked for the reasons

underlying not using (certain) interventions. This is necessary in order to be able to

distinguish personal choices (e.g., not agreeing with the philosophy of the intervention), from

lack of availability (interventions not being distributed in the area), barriers to access (for

example, waiting lists or costly interventions solely provided privately) or knowledge barriers

(parents not knowing of the existence of certain interventions). Future work may also include

further exploring the regional variations by analysing the results per country, taking into

account the respective national health systems and exploring the different patterns of public

versus private provision of services in each country that might have affected our findings.

Conclusions

In conclusion, our study showed that in the Eastern and Southern regions of Europe more

educated parents are more successful than parents with lower educational level in obtaining

use of specialist interventions that could improve the outcomes of children with autism. This

finding is particularly notable since, as outlined above, our sample had a higher education

level than the general European population. Moreover, it appeared that even relatively low-

cost and commonly publicly funded interventions such as speech and language therapy are

not immediately available for the majority of families, as in all Europe (except for Northern

Europe) children recently diagnosed were only half as likely to use intervention as children

diagnosed at least one year prior to survey completion.

Our data also showed a considerable variability in the amount of intervention used

across countries with the overall mean of the whole sample being 9 hours per week, which

raises the question of what may be the minimum necessary amount of intervention for autism.

While there is little scientific evidence on what constitutes the appropriate number of hours

per week necessary to obtain long-lasting positive outcomes, some guidelines give explicit


24

recommendations (at least 25 hours per week: Myers & Johnson, 2007). Other guidelines,

such as the Practice Parameters released by the American Academy of Child and Adolescent

Psychiatry (Volkmar et al., 2014) do not include a specification of the amount of the

“appropriate, evidence-based, and structured educational and behavioral interventions” (p.

244) recommended, and low-intensity (and therefore more sustainable in the real settings)

versions of well-established models (Dawson et al., 2010) are just beginning to be tested

(Vismara, Colombi, & Rogers, 2009).

At a societal and political level our study highlights the pressing need to contrast

inequalities in access to healthcare. Training professionals in the community, particularly

those employed in national health and educational systems, to early diagnose and treat ASD

is crucial to ensure that families are not left alone in dealing with their child’s difficulties.

Parent support strategies should be implemented involving the civil society in an inclusive

model of awareness. Public services need to be empowered in terms of funds and resources

in order to guarantee earliness and continuity in the provision of intervention and education.

In the economic uncertainty that characterises these times, it is vital to ensure that sound and

scalable interventions are tested in international collaborative efforts and then implemented in

the communities across Europe The implementation of methodologically rigorous RCTs of

interventions that are realistically implementable within the constraints of school and clinic

services in Europe will provide evidence on the “minimum critical amount” needed to make

long-lasting improvements in outcome. Research findings should, in turn, inform future

policy and practice guidelines for treatment provision for all young children with autism

across Europe.


25

Acknowledgements

We are grateful to all the parents who participated in the study and to the parent associations

that were involved in recruiting the participants.

Funding

This research was supported by COST Action BM1004 funded by the European Science

Foundation. TC and JG also received support from the Innovative Medicines Initiative Joint

Undertaking under grant agreement no. 115300, resources of which are composed of

financial contribution from the European Union’s Seventh Framework Programme

(FP7/2007–2013) and EFPIA companies’ in-kind contribution.


26

References

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T.

(2006). Prevalence of disorders of the autism spectrum in a population cohort of

children in South Thames: the Special Needs and Autism Project (SNAP). The

Lancet, 368(9531), 210-215.

Ballesteros, M., Jurkiewicz, K., & Meurens, N. (2013). Member States' Policies for Children

with Disabilities Brussels: European Parliament.

Barrett, B., Byford, S., Sharac, J., Hudry, K., Leadbitter, K., Temple, K., . . . Green, J. (2012).

Service and wider societal costs of very young children with autism in the UK.

[Research Support, Non-U.S. Gov't]. J Autism Dev Disord, 42(5), 797-804. doi:

10.1007/s10803-011-1306-x

Bölte, S., Marschik, P., Falck-Ytter, T., Charman, T., Roeyers, H., & Elsabbagh, M. (2013).

Infants at risk for autism: a European perspective on current status, challenges and

opportunities. European Child & Adolescent Psychiatry, 1-8. doi: 10.1007/s00787-

012-0368-4

Bowker, A., D’Angelo, N., Hicks, R., & Wells, K. (2011). Treatments for Autism: Parental

Choices and Perceptions of Change. Journal of Autism and Developmental Disorders,

41(10), 1373-1382. doi: 10.1007/s10803-010-1164-y

Bradley, R. H., & Corwyn, R. F. (2002). SOCIOECONOMIC STATUS AND CHILD

DEVELOPMENT. Annual Review of Psychology, 53(1), 371-399. doi:

doi:10.1146/annurev.psych.53.100901.135233

Buescher AV, Cidav Z, Knapp M, & DS, M. (2014 ). Costs of autism spectrum disorders in

the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721-728. doi:

10.1001/jamapediatrics.2014.210.

Carter, A. S., Messinger, D. S., Stone, W. L., Celimli, S., Nahmias, A. S., & Yoder, P.

(2011). A randomized controlled trial of Hanen’s ‘More Than Words’ in toddlers with

early autism symptoms. Journal of Child Psychology and Psychiatry, 52(7), 741-752.

doi: 10.1111/j.1469-7610.2011.02395.x


27

Cassidy, A., McConkey, R., Truesdale-Kennedy, M., & Slevin, E. (2008). Preschoolers with

autism spectrum disorders: the impact on families and the supports available to them.

Early Child Development and Care, 178(2), 115-128. doi:

10.1080/03004430701491721

Commission Decision of 12 February 2007 adopting the work plan for 2007 for

implementation of the programme of Community action in the field of public health

(2003-2008), including the annual work programme for grants. (2007). Official

Journal of the European Union, 50, 27-44.

Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., . . . Varley, J.

(2010). Randomized, Controlled Trial of an Intervention for Toddlers With Autism:

The Early Start Denver Model. Pediatrics, 125(1), e17-e23. doi: 10.1542/peds.2009-

0958

Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal

Investigators; Centers for Disease Control and Prevention (CDC) (2014). Prevalence

of autism spectrum disorder among children aged 8 years - autism and developmental

disabilities monitoring network, 11 sites, United States, 2010. Morbidity and

mortality weekly report. Surveillance summaries (Washington, DC: 2002), 63, 1.

Eurostat, t. S. O. o. t. E. U. (2014). Tertiary educational attainment by sex, age group 30-34

(t2020_41). In D. t. t2020_41 (Ed.).

García-Primo, P., Hellendoorn, A., Charman, T., Roeyers, H., Dereu, M., Roge, B., . . .

Canal-Bedia, R. (2014). Screening for autism spectrum disorders: state of the art in

Europe. European Child & Adolescent Psychiatry, 23(11), 1005-1021. doi:

10.1007/s00787-014-0555-6

Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H. (2007). Parental reports on the use of

treatments and therapies for children with autism spectrum disorders. Research in

Autism Spectrum Disorders, 1(3), 195-209. doi: 10.1016/j.rasd.2006.08.006

Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., . . . Pickles, A.

(2010). Parent-mediated communication-focused treatment in children with autism

(PACT): a randomised controlled trial. The Lancet, 375(9732), 2152-2160.

doi: http://dx.doi.org/10.1016/S0140-6736(10)60587-9

http://dx.doi.org/10.1016/S0140-6736(10)60587-9


28

Haute Autorité de Santé (2012). Recommendation de bonne pratique: Autisme et autres

troubles envahissants du développement : diagnostic et évaluation chez l’adulte.

Health Council of the Netherlands. Autism spectrum disorders: A lifetime of difference. The

Hague: Health Council of the Netherlands, 2009; publication no. 2009//09E

Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet

survey of treatments used by parents of children with autism. Research in

Developmental Disabilities, 27(1), 70-84. doi: 10.1016/j.ridd.2004.12.002

Kaale, A., Smith, L., & Sponheim, E. (2012). A randomized controlled trial of preschool-

based joint attention intervention for children with autism. Journal of Child

Psychology and Psychiatry, 53(1), 97-105. doi: 10.1111/j.1469-7610.2011.02450.x

Kasari, Connie, Lawton, Kathy, Shih, Wendy, Barker, Tyson V., Landa, Rebecca, Lord,

Catherine, . . . Senturk, Damla. (2014). Caregiver-Mediated Intervention for Low-

Resourced Preschoolers With Autism: An RCT. Pediatrics, 134(1), e72-e79. doi:

10.1542/peds.2013-3229

Lai, M.-C., Lombardo, M. V., & Baron-Cohen, S. (2014). Autism. The Lancet, 383(9920),

896-910.

Landa, R. J., Holman, K. C., O’Neill, A. H., & Stuart, E. A. (2011). Intervention targeting

development of socially synchronous engagement in toddlers with autism spectrum

disorder: a randomized controlled trial. Journal of Child Psychology and Psychiatry,

52(1), 13-21. doi: 10.1111/j.1469-7610.2010.02288.x

Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M.,

& Fryer, G. (2008). Disparities in diagnosis and access to health services for children

with autism: Data from the National Survey of Children's Health. Journal of

Developmental and Behavioral Pediatrics, 29(3), 152-160.

Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children

with autism? Autism, 11(2), 111-122. doi: 10.1177/1362361307077506

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., .

. . Kirby, R. S. (2009). Racial/Ethnic Disparities in the Identification of Children With

Autism Spectrum Disorders. American Journal of Public Health, 99(3), 493-498. doi:

10.2105/ajph.2007.131243


29

McConachie, H., Fletcher-Watson, S., & Working Group 4, COST Action ‘Enhancing the

Scientific Study of Early Autism’ (2014). Building capacity for rigorous controlled

trials in autism: the importance of measuring treatment adherence. Child: Care,

Health and Development, n/a-n/a. doi: 10.1111/cch.12185

Myers, S. M., & Johnson, C. P. (2007). Management of Children With Autism Spectrum

Disorders. Pediatrics, 120(5), 1162-1182. doi: 10.1542/peds.2007-2362

Narzisi, A., Colombi, C., Balottin, U., & Muratori, F. (2013). Non-Pharmacological

Treatments in Autism Spectrum Disorders: An Overview on Early Interventions for

Pre-schoolers. Current clinical pharmacology.

National Institute for Health and Care Excellence (2013). Autism. The management and

support of children and young people on the autism spectrum; NICE clinical guideline

170.

Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for

young children with autism spectrum disorders (ASD). [Meta-Analysis Research

Support, Non-U S Gov't Review]. Cochrane Database Syst Rev, 30(4).

Pajareya, K., & Nopmaneejumruslers, K. (2011). A pilot randomized controlled trial of

DIR/Floortime™ parent training intervention for pre-school children with autistic

spectrum disorders. Autism, 15(5), 563-577. doi: 10.1177/1362361310386502

Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G., & Baghdadli, A. (2012). Special

education and care services for children, adolescents, and adults with autism spectrum

disorders in France: Families’ opinion and satisfaction. Autism. doi:

10.1177/1362361312460952

Raz, R., Lerner-Geva, L., Leon, O., Chodick, G., & Gabis, L. V. (2013). A Survey of Out-of-

Pocket Expenditures for Children with Autism Spectrum Disorder in Israel. J Autism

Dev Disord. doi: 10.1007/s10803-013-1782-2

Ruble, L. A., & McGrew, J. H. (2007). Community services outcomes for families and

children with autism spectrum disorders. Research in Autism Spectrum Disorders,

1(4), 360-372. doi: 10.1016/j.rasd.2007.01.002

Regulation (EU) No 1301/2013 of the European Parliament and of the Council of 17

December 2013 on the European Regional Development Fund and on specific


30

provisions concerning the Investment for growth and jobs goal and repealing

Regulation (EC) No 1080/2006.

Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., . . .

Cuniff, C. (2009). Timing of identification among children with an autism spectrum

disorder: findings from a population-based surveillance study. [Research Support,

N.I.H., Extramural Research Support, Non-U.S. Gov't, Research Support, U.S. Gov't,

P.H.S.]. J Am Acad Child Adolesc Psychiatry, 48(5), 474-483. doi:

10.1097/CHI.0b013e31819b3848

Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children

with autism and Down syndrome. [Research Support, Non-U.S. Gov't]. J Autism Dev

Disord, 36(7), 921-933. doi: 10.1007/s10803-006-0129-7

Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2014). Longitudinal change in

the use of services in autism spectrum disorder: Understanding the role of child

characteristics, family demographics, and parent cognitions. Autism, 18(4), 433-446.

doi: 10.1177/1362361313476766

Thomas, K., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care

for autism-related services. [Research Support, N.I.H., Extramural

Research Support, U.S. Gov't, P.H.S.]. J Autism Dev Disord, 37(10), 1902-1912. doi:

10.1007/s10803-006-0323-7

Thomas, K., Morrissey, J., & McLaurin, C. (2007). Use of Autism-Related Services by

Families and Children. Journal of Autism and Developmental Disorders, 37(5), 818-

829. doi: 10.1007/s10803-006-0208-9

UN. (2006). International Standard ISO 3166-1, Codes for the representation of names of

countries and their subdivisions--Part 1: Country codes, ISO 3166-1: 2006 (E/F).

Geneva.

UN. (2007). Convention on the Rights of Persons with Disabilities. Annex 1, Final report of

the Ad Hoc Committee on a Comprehensive and Integral International Convention on

the Protection and Promotion of the Rights and Dignity of Persons with Disabilities

[24 January 2007, A/RES/61/106].

Vicente, M. R., & López, A. J. (2011). Assessing the regional digital divide across the

European Union-27. Telecommunications Policy, 35(3), 220-237. doi:

http://dx.doi.org/10.1016/j.telpol.2010.12.013


31

Vismara, L. A., Colombi, C., & Rogers, S. J. (2009). Can one hour per week of therapy lead

to lasting changes in young children with autism? Autism, 13(1), 93-115. doi:

10.1177/1362361307098516

Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014).

Practice Parameter for the Assessment and Treatment of Children and Adolescents

With Autism Spectrum Disorder. Journal of the American Academy of Child and

Adolescent Psychiatry, 53(2), 237-257.

Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-

VanderWeele, J. (2011). A Systematic Review of Early Intensive Intervention for

Autism Spectrum Disorders. Pediatrics, 127(5), e1303-e1311. doi:

10.1542/peds.2011-0426


32

Tables

Table 1 Sample questions from the survey

A European Survey of Intervention Provision for Young Children with Autism COST-ESSEA Network

A) Treatment section In this section of the survey you will be asked about the type and quantity of TREATMENT that your child currently receives. You will be asked to say how many hours of treatment your child usually receives PER WEEK including sessions at home, in school or clinic based. For example, if your child receives 1 hour of therapy every 2 weeks, you should enter 0.5 hours per week. If your child receives several kinds of treatments, this will be asked for each of them. Is your child currently receiving SPEECH AND LANGUAGE THERAPY? Yes No How many hours of SPEECH AND LANGUAGE THERAPY does your child usually receive per week? N. of hours per week: ____


33

Table 2 Characteristics of participants

n Gender: Age in months Verbal ability: Respondent: Respondent educational level:

male

non verbal / single words

phrase speech

Mother

up to high school diploma

graduate and postgraduate

n (%) M (SD) n (%) n (%) n (%) n (%) n (%) Western Europe 473 391 (82.7%) 59.97 (13.53) 135 (28.5%) 338 (71.5%) 400 (84.6%) 167 (35.3%) 306 (64.7%) Belgium 108 85 (78.7%) 62.32 (13.59) 17 (15.7%) 91 (84.3%) 91 (84.3%) 32 (29.6%) 76 (70.4%) France 188 158 (84%) 56.84 (13.64) 84 (44.7%) 104 (55.3%) 166 (88.3%) 45 (23.9%) 143 (76.1%) Germany 78 66 (84.6%) 61.59 (11.98) 25 (32.1%) 53 (67.9%) 58 (74.4%) 50 (64.1%) 28 (35.9%) Netherlands 99 82 (82.8%) 62.07 (13.48) 9 (9.1%) 90 (90.9%) 85 (85.9%) 40 (40.4%) 59 (59.6%)

Northern Europe 341 283 (83%) 60.95 (13.74) 107 (31.3%) 234 (68.6%) 301 (88.3%) 101 (29.6%) 240 (70.4%) Denmark 75 57 (76%) 62.23 (14.56) 14 (18.7%) 61 (81.3%) 66 (88%) 5 (6.7%) 70 (93.3%) Finland 41 36 (87.8%) 64.51 (12.07) 21 (51.2%) 20 (48.8%) 35 (85.4%) 12 (29.3%) 29 (70.7%) Iceland 49 42 (85.7%) 61.15 (13.04) 8 (16.3%) 41 (83.7%) 43 (87.8%) 14 (28.6%) 35 (71.4%) Ireland 31 24 (77.4%) 54.52 (13.94) 13 (41.9%) 18 (58.1%) 27 (87.1%) 12 (38.7%) 19 (61.3%) Norway 34 30 (88.2%) 56.85 (14.77) 13 (38.2%) 21 (61.8%) 28 (82.4%) 8 (23.5%) 26 (76.5%) United Kingdom 111 94 (84.7%) 61.74 (13.14) 38 (34.2%) 73 (65.8%) 102 (91.9%) 50 (45%) 61 (55%)

Eastern Europe 354 288 (81.4%) 56.30 (13.75) 142 (40.1%) 212 (59.9%) 308 (87%) 141 (39.8%) 213 (60.2%) Czech Republic 105 83 (79%) 57.23 (13.06) 57 (54.3%) 48 (45.7%) 95 (90.5%) 62 (59%) 43 (41%) Hungary 111 95 (85.6%) 58.63 (12.96) 28 (25.2%) 83 (74.8%) 102 (91.9%) 51 (45.9%) 60 (54.1%) Poland 76 57 (75%) 55.45 (14.13) 27 (35.5%) 49 (64.5%) 63 (82.9%) 19 (25%) 57 (75%) Romania 62 53 (85.5%) 51.63 (14.86) 30 (48.4%) 32 (51.6%) 48 (77.4%) 9 (14.5%) 53 (85.5%)

Southern Europe 512 427 (83.4%) 55.98 (14.39) 236 (46.1%) 276 (53.9% 381 (74.4%) 206 (40.2%) 306 (59.8%) Italy 104 88 (84.6%) 60.78 (15.04) 47 (45.2%) 57 (54.8%) 68 (65.4%) 42 (40.4%) 62 (59.6%) Macedonia 33 28 (84.8%) 55.15 (12.66) 25 (75.8%) 8 (24.2%) 29 (87.9%) 14 (42.4%) 19 (57.6%) Portugal 144 120 (83.3%) 54.75 (15.14) 60 (41.7%) 84 (58.3%) 110 (76.4%) 59 (41%) 85 (59%) Spain 231 191 (82.7%) 54.7 (13.46) 104 (45%) 127 (55%) 174 (75.3%) 91 (39.4%) 140 (60.6%)

Total 1680 1389 (82.7%) 58.18 (14.04) 620 (36.9%) 1060 (63.1%) 1390 (82.7%) 615 (36.6%) 1065 (63.4%)


34

Table 3 Use and intensity of interventions

Typeb of intervention None Any BEH DEV and/or REL SLT OT OTH PAR TR

n % % M (SD) % M (SD) % M (SD) % M (SD) % M (SD) % M (SD) % M (SD) Western Europe 473 8.5% 91.5% 7.58 (11.36) 29.8% 6.87 (10.34) 15.6% 5.49 (8.32) 67.7% 1.38 (1.78) 36.8% 1.23 (0.71) 47.1% 4.76 (8.63) 31.3% 1.28 (1.68) Belgium 108 7.4% 92.6% 7.40 (12.44) 17.6% 6.34 (10.39) 22.2% 3.98 (4.33) 66.7% 1.72 (1.03) 43.5% 1.53 (0.83) 50.0% 4.78 (11.02) 43.5% 1.19 (1.91) France 188 5.9% 94.1% 10.01 (13.28) 47.3% 8.32 (11.4) 18.1% 5.81 (9.21) 84.0% 1.34 (2.39) 19.1% 0.97 (0.6) 51.6% 5.3 (8.63) 13.8% 2.18 (2.57) Germany 78 7.7% 92.3% 4.20 (5.77) 24.4% 2.26 (4.32) 10.3% 1.44 (0.5) 65.4% 1.19 (0.43) 73.1% 1.22 (0.67) 48.7% 2.34 (3.37) 33.3% .96 (.96) Netherlands 99 15.2% 84.8% 5.42 (7.54) 14.1% 4.66 (6.77) 8.1% 5.38 (5.06) 39.4% 1.16 (0.81) 34.3% 1.14 (0.55) 34.3% 5.92 (8.24) 49.5% 1.06 (.80)

Northern Europe 341 17.0% 82.1% 12.50 (13.45) 33.7% 14.82 (11.61) 12.6% 6.64 (8.48) 46.0% 1.17 (1.41) 29.3% 1.81 (0.86) 28.4% 10.81 (11.77) 39% 1.19 (1.43) Denmark 75 24% 76.0% 16.20 (15.47) 24% 23 (10.98) 16.0% 4.92 (8.04) 22.7% 0.91 (0.5) 22.7% 0.98 (0.68) 26.7% 17.85 (11.21) 46.7% 1.07 (.82) Finland 41 4.9% 95.1% 7.18 (9.05) 31.7% 3.88 (4.67) 19.5% 3.69 (2.96) 85.4% 1.05 (0.5) 61.0% 0.92 (0.31) 43.9% 6.01 (9.4) 61.1% .96 (1.50) Iceland 49 6.1% 93.9% 18.22 (12.43) 59.2% 18.48 (9.88) 6.1% 5 (1) 44.9% 0.84 (0.26) 26.5% 1.43 (0.63) 38.8% 12.11 (10.54) 38.8% 1.05 (2.26) Ireland 31 29.% 71.0% 10.79 (8.40) 38.7% 12.67 (8) 12.9% 5.75 (0.96) 32.3% 1.39 (1.42) 29% 1.61 (1.73) 6.5% 6.5 (4.95) 35.5% 1.90 (2.12) Norway 34 2.9% 97.1% 19.49 (15.01) 67.6% 17.43 (12.79) 20.6% 7.93 (10.19) 11.8% 5.81 (4.96) 20.6% 1.36 (0.85) 35.3% 11.25 (9.15) 50.0% .82 (.82) United Kingdom 111 25.2% 74.8% 6.97 (11.42) 18% 7.54 (9.23) 8.1% 4.57 (6.66) 62.2% 1.11 (1.3) 26.1% 1.24 (0.94) 23.4% 7.93 (13.84) 23.4% 1.61 (1.14)

Eastern Europe 354 8.5% 91.5% 10.69 (12.73) 33.1% 7.86 (7.54) 24.9% 4.34 (5.01) 67.5% 2.57 (4.00) 32.5% 3.59 (4.37) 46.3% 5.54 (7.10) 45.5% 1.40 (1.71) Czech Republic 105 17.1% 82.9% 5.47 (9.22) 8.6% 7.11 (7.86) 6.7% 5.43 (6.89) 60.0% 1.33 (1.44) 18.1% 1.4 (1.41) 34.3% 6.5 (8.83) 45.7% .62 (.87) Hungary 111 5.4% 94.6% 8.61 (10.80) 20.7% 4.24 (5.99) 50.5% 2.83 (3.21) 55.9% 2.31 (3.21) 39.6% 2.51 (2.05) 45.0% 4.6 (4.66) 48.6% 2.01 (2.14) Poland 76 1.3% 98.7% 11.95 (10.59) 46.1% 6.77 (7.16) 11.8% 3.72 (2.86) 94.7% 1.53 (0.88) 38.2% 5.71 (6.49) 85.5% 5.05 (7.28) 31.6% .78 (.70) Romania 62 8.1% 91.9% 20.86 (16.77) 80.6% 10.42 (7.68) 25.8% 4.58 (3.27) 67.7% 6.63 (7.22) 37.1% 4.83 (4.66) 21% 8.92 (8.18) 56.5% 1.99 (1.79)

Southern Europe 512 3.9% 96.1% 8.50 (10.54) 33.0% 6.61 (7.71) 35.2% 3.78 (5.48) 70.3% 2.17 (1.88) 38.3% 1.75 (1.18) 39.3% 4.65 (7.36) 38.9% 1.64 (4.18) Italy 104 1.9% 98.1% 10.86 (9.82) 64.4% 8.75 (8.06) 26.0% 3.63 (3.96) 51.0% 1.97 (0.89) 63.5% 2.14 (1.51) 30.8% 3.58 (5.24) 33.7% 1.19 (1.07) Macedonia 33 12.1% 87.9% 3.43 (1.87) 21.2% 0.64 (0.24) 21.2% 0.86 (0.56) 63.6% 2.17 (1.06) 0.0% . (.) 27.3% 2.11 (1.36) 81.8% .67 (.24) Portugal 144 6.2% 93.8% 7.53 (10.49) 17.4% 8.52 (9.58) 27.1% 3.62 (6.17) 72.9% 1.55 (0.96) 48.6% 1.3 (0.5) 36.8% 5.64 (9.27) 33.3% 2.03 (4.30) Spain 231 2.2% 97.8% 8.67 (11.25) 30.3% 4.47 (6.06) 46.3% 2.6 (4.46) 78.4% 2.59 (2.4) 26.0% 1.85 (1.19) 46.3% 4.69 (7.11) 38.5% 1.89 (5.33)

Total 1680 9% 91% 9.44 (11.95) 32.3% 8.69 (9.86) 22.9% 3.63 (5.32) 64.0% 1.88 (2.5) 34.8% 1.86 (2.3) 40.8% 5.77 (8.71) 38.2% 1.40 (2.69)

a Intensity is defined as n. of hours per week among those who reported using the specified intervention. Intensity of “any” intervention is the total n. of hours per week among those who reported using at least one intervention. b Types of intervention: Any: any intervention; BEH: behavioural intervention; DEV and/or REL: developmental and/or relationship-based intervention; SLT: speech and language therapy; OT: occupational therapy; OTH: other educational and psychological interventions; PAR TR: parent training.


35

Table 4 Use of intervention by European regions

Use χ²(p)

n % Western Europe i

Northern Europe i

Eastern Europe i

Southern Europe i

Any intervention Western Europe j 473 91.5% – Northern Europe j 341 82.1% 16.219 (<.001) – Eastern Europe j 354 91.5% .000 (.545) 13.527 (<.001) – Southern Europe j 512 96.1% 8.900 (.002) 46.562 (<.001) 8.029 ( .004) –

Total 1680 91% Behavioural, Developmental, Relationship-based interventions

Western Europe j 473 39.7% – Northern Europe j 341 38.4% .147 (.378) – Eastern Europe j 354 46.6% 3.899 ( .029) 4.769 (.018) – Southern Europe j 512 53.9% 19.785 (<.001) 19.685 (<.001) 4.458 (.021) –

Total 1680 45.2% Speech and language therapy

Western Europe j 473 67.7% – Northern Europe j 341 46% 38.150 (< .001) – Eastern Europe j 354 67.5% .002 (.513) 32.671 (< .001) – Southern Europe j 512 70.3% .813 (.202) 50.505 (< .001) .769 (.211) –

Total 1680 64%


36

Table 5 Amount of intervention by European regions

Amounta Mean Differences i-j (p)

Min-Max M (SD) Mdn (IQR) Western Europe i

Northern Europe i

Eastern Europe i

Southern Europe i

Welch’s F (ω2)

Any intervention 6.56 (.01) Western Europe j 0-84 6.94 (11.07) 3 (1.5-7) – Northern Europe j 0-64 10.26 (13.09) 3.25 (0.5-20) -3.32 (<.001) – Eastern Europe j 0-76 9.79 (12.54) 5.57 (2-12.24) -2.85 (.003) 0.47 (1.000) – Southern Europe j 0-80 8.17 (10.46) 5 (2.81-9) -1.23 (.596) 2.10 (.061) 1.62 (.265) –

Total 0-84 8.59 (11.72) 4 (1.62-10) Behavioural, Developmental, Relationship-based interventions

19.54 (.09)

Western Europe j 0-81.5 2.91 (7.51) 0 (0-2) – Northern Europe j 0-50 5.84 (10.37) 0 (0-9.5) -7.87 (<.001) – Eastern Europe j 0-55 3.67 (7.1) 0 (0-4) -0.57 (1.000) 7.31 (<.001) – Southern Europe j 0-44 3.51 (6.87) 1 (0-4) 0.81 (1.000) 8.68 (<.001) 1.37 (.876) –

Total 0-81.5 3.85 (7.98) 0 (0-4) Speech and language therapy

37.42 (.04)

Western Europe j 0-30 0.93 (1.6) 1 (0-1) – Northern Europe j 0-10 0.54 (1.12) 0 (0-1) 0.39 (.060) – Eastern Europe j 0-25 1.74 (3.5) 1 (0-2) -0.81 (<.001) -1.20 (<.001) – Southern Europe j 0-20 1.53 (1.86) 1 (0-2) -0.59 (<.001) -0.99 (<.001) 0.21 (.890) –

Total 0-30 1.2 (2.19) 1 (0-1.5)

a Amount of intervention received: n. of hours per week in total samples (including those reporting not receiving the intervention).


37

Table 6 Predictors of use of interventions

Europe (N=1680) Western Europe (n=473) Northern Europe (n=341) Eastern Europe (n=354) Southern Europe (n=512) OR (p)1 95% CI2 OR (p) 95% CI OR (p) 95% CI OR (p) 95% CI OR (p) 95% CI Use of any intervention Child’s age .99 (.396) .98-1.01 .98 (.431) .96-1.02 .99 (.421) .97-1.01 1.02 (.304) .98-1.05 1.02 (.227) .98-1.07 Child’s gender (male) .92 (.720) .58-1.45 1.36 (.451) .61-3.02 .76 (.488) .35-1.66 1.04 (.934) .37-2.91 .51 (.385) .11-2.31 Child’s verbal ability (phrase speech) .83 (.368) .56-1.24 1.06 (.891) .47-2.38 .72 (.352) .36-1.43 1.01 (.988) .43-2.36 .74 (.561) .27-2.04 Time since diagnosis (>=1 year) 2.29 (<.001) 1.58-3.33 2.55 (.011) 1.24-5.22 1.28 (.429) .69-2.33 2.64 (.039) 1.05-6.66 2.12 (.183) .70-6.44 Parental educational level (high) 1.80 (.001) 1.28-2.53 1.86 (.065) .96-3.60 1.92 (.027) 1.07-3.43 1.64 (.212) .75-3.55 4.54 (.004) 1.61-12.84

χ²(5)=33.643, p<.001 H-L χ²(8)= 16.108, p=.041; R²= .04.

χ²(5)= 11.370, p=.045; H-L χ² ns; R²=.05

χ²(5)= 7.486, p=.187; H-L χ²(8)= 17.826, p=.023; R²=.04

χ²(5)= 12.084, p=.034; H-L χ² ns; R²=.07

χ²(5)= 18.641, p= .002; H-L χ² ns; R²=.13

Use of Behavioural, Developmental, Relationship-based interventions Child’s age .98 (<.001) .97-.98 .98 (.187) .97-1.00 .95 (<.001) .93-.97 .98 (.079) .96-1.00 .98 (.088) .97-1.00 Child’s gender (male) .89 (.407) .69-1.16 .90 (.679) .55-1.48 .77 (.400) .42-1.42 .99 (.962) .57-1.72 .90 (.682) .56-1.47 Child’s verbal ability (phrase speech) .72 (.003) .58-.89 .52 (.004) .34-.81 1.02 (.932) .61-1.71 .97 (.899) .61-1.55 .66 (.033) .45-.97 Time since diagnosis (>=1 year) 1.92 (<.001) 1.52-2.43 1.66 (.019) 1.08-2.54 1.67 (.052) .99-2.82 1.67 (.047) 1.01-2.78 2.13 (.002) 1.33-3.42 Parental educational level (high) 1.54 (<.001) 1.25-1.89 1.14 (.515) .77-1.70 1.75 (.033) 1.04-2.94 2.21 (.001) 1.41-3.47 1.67 (.006) 1.16-2.40

χ²(5)= 83.547, p<.001 H-L χ² ns; R²= .06.

χ²(5)= 19.362, p=.002; H-L χ² ns; R²=.05

χ²(5)= 29.664, p<.001; H-L χ² ns; R²=.12

χ²(5)= 20.323, p=.001; H-L χ² ns; R²=.07

χ²(5)= 23.475, p=<.001; H-L χ² ns; R²=.06

Use of speech and language therapy Child’s age .99 (.387) .98-1.01 .99 (.207) .97-1.01 1.00 (.834) .98-1.00 1.01 (.265) .99-1.03 1.00 (.988) .98-1.02 Child’s gender (male) .95 (.705) .72-1.24 1.02 (.931) .61-1.71 .87 (.647) .48-1.56 .55 (.072) .29-1.05 1.41 (.175) .86-2.34 Child’s verbal ability (phrase speech) .74 (.010) .59-.93 .61 (.052) .37-1.01 .538 (.015) .33-.88 .92 (.763) .56-1.53 .87 (.519) .57-1.32 Time since diagnosis (>=1 year) 2.06 (<.001) 1.63-2.58 1.83 (.006) 1.19-2.81 1.57 (.067) .97-2.55 2.07 (.006) 1.23-3.49 2.31 (.001) 1.42-3.76 Parental educational level (high) 1.07 (.539) .87-1.32 1.33 (.171) .88-1.99 .88 (.606) .55-1.42 1.21 (.420) .76-1.95 1.12 (.573) .75-1.67

χ²(5)= 51.207; p=<.001; H-L χ² ns; R²= .04

χ²(5)= 16.679, p=.005; H-L χ² ns; R²=.05

χ²(5)= 11.153, p=.048; H-L χ² ns; R²=.04

χ²(5)= 20.950, p=.001; H-L χ²ns; R²=.08

χ²(5)= 17.891, p=.003; H-L χ² ns; R²=.05

Note: The table reports the predictors’ odds ratios and corresponding confidence intervals, the models’ χ² statistics, the Hosmer & Lemeshow’s goodness-of-fit tests and Nagelskerke R²s. Whenever the model’s χ² was significant and the Hosmer & Lemeshow’s test indicated a good fit of the data, predictors significant at p<.005 have been marked in bold.

use of early intervention for young children with autism spectrum disorder across...

Documents