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What do parents of children with autism expect from participation in research? A community survey about early autism studies


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Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.
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DOI: 10.1177/1362361317728436
Autism spectrum disorder (hereafter ‘autism’) affects
around 1% of the population worldwide (Elsabbagh
et al., 2012) and has a dramatic impact both on those with
the diagnosis and people around them. As well as entail-
ing core challenges in social, communication and daily
living (American Psychiatric Publishing (APA), 2013),
autism is associated with reduced quality of life (Magiati
et al., 2014) which extends to family members (Hayes
and Watson, 2013; Khanna et al., 2011), low rates of
employment (Roux et al., 2013) and a series of comorbid
mental health difficulties (Simonoff et al., 2013). Autism
is also linked with dramatically shortened life expectan-
cies (Nordentoft et al., 2013). While intellectual disabil-
ity is present in about a third of cases (Developmental,
Disabilities Monitoring Network Surveillance Year
(DDMNSY) and Centers for Disease Control and
Prevention (CDC), 2014), associated difficulties and
impairments affect cognitively able autistic people too.
Thus, the life experiences of people with autism are often
characterised by poor understanding, untapped potential
and wasted opportunity. In an effort to better understand
the challenges faced by people on the autism spectrum,
large amounts of research are funded and published every
year (Pellicano et al., 2013). We believe this research
may be better able to achieve its broad goals – of under-
standing the autistic experience and providing supports
to maximise opportunity and choice for those with a
diagnosis – if it can be more effectively grounded in
engagement with the community (Pellicano and Stears,
What do parents of children with autism
expect from participation in research?
A community survey about early autism
Sue Fletcher-Watson1, Kenneth Larsen2, Erica Salomone3,4, and
Members of the COST ESSEA Working Groups*
Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research
with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents
who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large
majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service
quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research,
but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in
research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed
towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We
interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.
autism spectrum disorder, development, ethics, infancy, parents
1The University of Edinburgh, UK
2Oslo University Hospital, Norway
3King’s College London, UK
4University of Turin, Italy
*Members of the working groups who contributed to this research are
listed in Appendix 1.
Corresponding author:
Sue Fletcher-Watson, Patrick Wild Centre, The University of
Edinburgh, Kennedy Tower, Morningside Terrace, Edinburgh EH10
5HF, UK.
728436AUT0010.1177/1362361317728436AutismFletcher-Watson et al.
Original Article
2 Autism 00(0)
Direct engagement with autistic people and their sup-
porters and family means that the goals of research, and
the modes adopted to achieve those goals, better align
with the needs of the community. This in turn helps to
ensure that results inform not just scientific knowledge
and theory but also policy and practice. Engagement
with stakeholder groups also entails specific advantages
for the academic community and individual research
teams. For example, understanding how parents of chil-
dren with autism conceptualise the condition can help us
to design study recruitment materials that more effec-
tively communicate the purpose of a project. Knowing
how participants expect to receive information from a
research team can inform protocol design – for example,
in deciding whether to correspond by post, email, text
message or via social media. These experiences can in
turn be used to update overarching ethical guidelines for
research. Recently, a longitudinal cohort study funded in
the United Kingdom was forced to close after recruit-
ment targets were missed by a very large margin.1
Understanding of the barriers to participation experi-
enced by potential participants is essential to prevent
this occurring again. This knowledge can also help us to
increase diversity in recruitment – for example, by
engaging with more families having limited experience
with academia (e.g. parents without University degrees)
or those from Black and minority ethnic groups (George
et al., 2014).
What is known already about attitudes to research
among the autism community? Two reports published in
the United Kingdom clearly show that there is some dis-
satisfaction in this community (incorporating autistic peo-
ple, family members and practitioners from health,
education and the third sector) about how the bulk of
autism research funding is spent (Pellicano et al., 2013;
Wallace et al., 2013). While investment principally
focuses on basic science questions concerning the causes
(genetic and otherwise) and characteristics (clinical, cog-
nitive, behavioural, neurological) of autism, unsurpris-
ingly stakeholders lament the relative paucity of research
on practical supports applicable to education, healthcare
and community settings. This pattern is replicated in early
autism research which tends to address causal and devel-
opmental questions at genetic, neurological, cognitive and
behavioural levels (Bolte et al., 2013; Dawson, 2010;
Zwaigenbaum et al., 2007), rather than to test short- and
long-term outcomes of early interventions, although the
pattern is rapidly changing (Estes et al., 2015; Pickles
et al., 2016; Rogers et al., 2014; Shire et al., 2016).
Another phenomenon apparent from previous investi-
gations of attitudes is that there can be large differences
of opinion between sub-groups within the autism com-
munity. The One in A Hundred report (Wallace et al.,
2013) reported diversity in rankings of priorities for
research between autistic adults versus parents of children
with autism. On a more specific topic, Kenny et al. (2015)
provided empirical support for a pattern already evident
in social media and elsewhere – that differences exist in
the preferred language used to describe autism both
between stakeholder categories and within groups. On
the other hand, the A Future Made Together report
(Pellicano et al., 2013) highlighted significant overlap
between stakeholder groups in priorities for research, and
this was replicated in our own comparison of attitudes to
early autism research across Europe (Fletcher-Watson
et al., 2016).
In choosing to examine differences between stake-
holder groups, and to attempt to derive consistent recom-
mendations from diverse samples, one aspect that existing
reports have not effectively probed is the degree of varia-
tion of opinion within a specific community sub-group. In
this investigation, we address this by specifically analys-
ing the responses of parents only, to a survey of attitudes to
early autism research. We also relate variability in attitudes
to other factors in an attempt to understand the personal
experiences associated with different attitudes to research.
This approach not only explores variability but also allows
us to extract concrete recommendations for researchers in
the field, and their ethical oversight bodies, which directly
relate to the individuals who are approached to enrol in
early autism studies: parents of children with autism. Early
autism research – specifically studies collecting data from
infant participants known to be more likely (relative to the
general population) to later receive an autism diagnosis
(Fletcher-Watson et al., 2016; Jones et al., 2014) – is a
research sub-field in particular need of effective stake-
holder engagement. In fact, early autism research is not
only subject to the issues highlighted above, such as the
need to recruit and retain longitudinal cohorts and a dearth
of intervention-focused projects (Bölte et al., 2013), but it
also entails specific ethical concerns (Fletcher-Watson
et al., 2016; Yudell et al., 2013; Zwaigenbaum et al., 2007).
Drawing on evidence from a large international survey,
and comparing this with published protocols from existing
early autism research studies, we aim to address the fol-
lowing questions. First, how are attitudes of parents of
children with autism towards early autism research related
to other factors? Factors under investigation include parent
and child characteristics and access to/quality of local ser-
vices which we hypothesise may link to more or less
favourable attitudes to research. For example, could fami-
lies with limited access to quality services display more
positive attitudes to research, perhaps as a way to secure
extra support for their child? Second, when enrolling in a
research study, what expectations do parents have regard-
ing availability of intervention, acceptable forms of meas-
urement, preferred modes of contact and sharing of
information? Finally, we investigate how parent expecta-
tions of research relate to the reality, as evidenced through
examination of early autism research protocols.
Fletcher-Watson et al. 3
A survey was developed focusing on early autism research
defined as ‘a specific area of autism research looking at
early signs of autism in babies and toddlers’.2 Details of
the survey design, which included focus groups across
three European countries, iterative development by the
research team, pilot tests with stakeholder representatives
and translation into multiple languages, can be found in
Fletcher-Watson et al. (2016). The survey was designed for
use by four different stakeholder groups (autistic adult,
parent, healthcare practitioner, education practitioner), but
in this report we focus on parent data only. Parents pro-
vided information about their children including diagnos-
tic information for the (youngest, if more than one) child
with autism and were asked to rate the quality of their local
autism services. Parents were also asked if they had, or
suspected they should have, an autism diagnosis.
The final survey section was prefaced with a short intro-
duction to the field of early autism research in order to
ensure a shared basic level of knowledge among respond-
ents. Subsequently participants were asked questions about
their attitudes to early autism research in five domains: (1)
reasons for doing research, (2) involvement in research
projects, (3) measurement in research projects, (4) inter-
vention and (5) ‘at-risk’ language. Finally, participants had
the opportunity to add further comments in a final text box.
In order to draw a comparison between parents’ expec-
tations of early autism research and actual research prac-
tice, we sourced the research protocol from Eurosibs
(European Babysibs Autism Research Network, www., a large consortium of researchers who are
studying infants with risk factors for developmental disor-
ders in several institutions in Europe (Birkbeck College
and Cambridge University, UK; Utrecht University and
Nijmegen University, The Netherlands; Ghent University,
Belgium; Institute Pasteur and Neurospin Imaging Centre,
France; University of Warsaw, Poland; University of
Padua and Istituto Superiore di Sanità, Italy; Karolinska
Institute and Uppsala University, Sweden).
Recruitment procedure
The survey was made available online and distributed by
researchers affiliated to the Enhancing the Scientific
Study of Early Autism (ESSEA) network in 11 countries:
Czech Republic, Finland, France, Italy, Israel, Macedonia,
Norway, Poland, Portugal, Spain and the United Kingdom.
Recruitment routes were largely via parents’ associations,
advocacy groups for autistic adults, and professional bod-
ies. In addition, the survey was advertised through a vari-
ety of social media and directed to the professional
networks of the authors. In Italy and the United Kingdom,
but in no other countries, recruitment included circulation
of the survey to parents whose families had previously
taken part in early autism research studies, either directly
through a register of former participants or indirectly via
social media associated with a research group. These coun-
tries contributed about 20% of the sample, but we have no
information on how many of these participants might have
had direct contact with an early autism study.
Analysis methods
Responses were collected and compiled in a single English-
language database for analysis. The design of the questions
minimised the need for translation as respondents were
asked to select from pre-set options in most cases. Where
open-ended responses were permitted, native speakers of
the original language translated the responses into English.
Participants were excluded from the final sample if they did
not complete the majority of the questions that probed atti-
tudes to autism, and if they were not resident in one of the
countries in which recruitment took place.
Before commencing analyses, we provide detailed
descriptions of the parent sample including descriptions of
their children with autism, and their services access and
ratings. Here, we also describe attitude to early autism
research, defined by response to the item ‘Do you think
research into the early signs of autism should be done?’,
and illustrate variability between countries. Thereafter, our
analyses are in three stages corresponding to our research
questions. First, we investigate attitudes to early autism
research by contrasting groups with positive and negative
attitude. These comparisons use t-tests adjusted for une-
qual variances with Bonferroni correction for multiple
comparisons where required, or chi-square and Fisher’s
exact tests depending on variable type. Where these analy-
ses are hindered by the unequal size of the two attitude-
defined groups, we use median splits based on other
variables of interest, or contrast extreme ends of the
response distribution to capture variability in attitudes.
Second, we describe preferences and expectations for
parents enrolled in research using frequencies and graphic
representations. The purpose of this section is not to contrast
groups but to provide coherent recommendations to
researchers based on community preferences. Finally, we
directly compare parent preferences, represented by fre-
quency counts, with a European common protocol of stand-
ardised and experimental measures for early autism research.
All analysis were performed in R, version 3.2.2, and
graphs were produced using Microsoft Excel version 15.30.
Sample characteristics and attitude to early
autism research
A total of 1040 parents from 11 different countries com-
pleted the online survey. The characteristics of the sample
4 Autism 00(0)
are presented in Table 1. Parents reported largely positive
attitudes when asked whether early autism research should
be done, with 87.5% selecting Yes, definitely. These par-
ticipants are referred to as the Positive attitude group
(n = 910). To avoid a drastic imbalance in group sizes,
which would impede interpretation of significance testing,
the remaining categories – Yes, probably (9.5%); Probably
not (0.7%); Definitely not (0.6%); Not sure (1.7%) – were
combined to create a Less Positive attitude group (n = 130).
However, this method is also flawed because it con-
flates a range of attitude values into a single group.
Therefore, we also repeated all between-groups analyses
on two groups split at the midpoint of the response scale.
These groups are Positive (97%) and Negative (1.3%),
with participants responding Not Sure excluded. In subse-
quent sections, we note only results where the comparison
of Positive versus Negative groups resulted in a different
pattern of significance to that found when reporting
Positive versus Less Positive group differences.
There was a significant difference in the proportion of
respondents in each attitude group by country, illustrated
in Figure 1. Less enthusiastic levels of support for early
autism research were found in the United Kingdom, fol-
lowed by Finland, Macedonia and the Czech Republic.
When analysing based on Positive versus Negative attitude
groups, the lowest levels of support were in Macedonia,
the United Kingdom, Norway and Spain (in that order).
The overwhelming preponderance of positive attitude
to a simple question about early autism research may mask
subtle differences of opinion between participants on spe-
cific topics within the field. Figure 2 illustrates the extent
to which parents agreed with selected statements derived
from pre-survey focus groups. In some areas, there is evi-
dence of consensus among the parents who responded to
Table 1. Participant characteristics by attitude to research on early autism.
Positive attitude Less positive attitude Group comparison
Parent gender, n (%) Female (85%) 760 (87%) 114 (13%) χ² (2) = 1.06, p = 0.59
Male (14%) 133 (90%) 15 (10%)
Uncategorised (1%) 5 (83%) 1 (17%)
Country of origin, n (%) UK 125 (75%) 42 (25%) χ² (10) = 60.41, p < 0.001**
Czech rep 98 (80%) 24 (20%)
France 95 (96%) 4 (4%)
Finland 77 (79%) 20 (21%)
Italy 38 (95%) 2 (5%)
Israel 9 (90%) 1 (10%)
Norway 81 (89%) 10 (11%)
Portugal 70 (92%) 6 (8%)
Spain 213 (95%) 12 (5%)
Macedonia 8 (80%) 2 (20%)
Poland 96 (93%) 7 (7%)
Parent age (years) Mean (SD) 41.5 (8.1) 42.2 (7.9) t (169.56) = 0.87, p = 0.38,
95% CI: −2.12 to 0.76
Years since left education Mean (SD) 22.7 (5.8) 21.5 (5.6) t (113.32) = 1.87, p = 0.06,
95% CI: −0.07 to 2.48
Employment status, n (%) Non-manual 402 (88%) 56 (12%) χ² (3) = 3.44, p = 0.33
Manual 58 (88%) 8 (12%)
Not in a job 111 (85%) 19 (15%)
Other 51 (80%) 13 (20%)
Child gender, n (%) Male 508 (86%) 82 (14%) χ² (1) = 1.90, p = 0.17
Female 124 (91%) 13 (9%)
Child current age (years) Mean (SD) 10.3 (6.7) 9.6 (5.7) t (135.82) = 1.19, p = 0.23,
95% CI: −0.51 to 2.05
Age at diagnosis (years) Mean (SD) 4.8 (4.2) 4.5 (3.4) t (130.02) = 0.81, p = 0.42,
95% CI: −0.47 to 1.11
Child learning difficulties Yes 384 (89%) 48 (11%) χ² (2) = 6.64, p = 0.04*
No 160 (82%) 36 (18%)
Not sure 88 (89%) 11 (11%)
SD: standard deviation; CI: confidence interval.
Totals and percentages shown here reflect the sample contributing data to the relevant survey item.
*Significant differences at p < 0.05.
**Significant differences at p < 0.01.
Fletcher-Watson et al. 5
Figure 1. Level of support for early autism research by country.
Figure 2. Difference in agreement on question 3, 5, 8 and 9 on focus group statements.
6 Autism 00(0)
this survey – for example, when asked about the impor-
tance of sharing information between researchers and par-
ticipants, the large majority of parents indicated high levels
of agreement (full data in Supplementary Table S1).
However, other statements, selected for illustration here,
reveal a greater spread of opinion, for example, when ask-
ing about the impact of ‘at-risk’ language, or about the
meaning of an autism diagnosis (statements 3 and 5).
Attitudes and factors: age of diagnosis
One factor which may play a role in defining attitudes to
early autism research could be the family’s experience
during the diagnostic process. To capture this, we calcu-
lated mean age of diagnosis of the child with autism, for
groups defined by the reported age-range at which con-
cerns were first raised. Most parents report concerns
before the age of 2 years (55.1%), or before the age of
4 years (36.0%). Only a small proportion of the parents
report that their first concerns were evident later than
4 years of age (8.9%). This contrasts with the fact that in
every age-of-concern category mean age of diagnosis is
close to or over 4 years old. Additionally, in the large
majority of cases, parents report that they or another fam-
ily member were the first to raise concerns (74.6%). An
estimate of time from first concern to diagnostic age was
computed based on the midpoint in the collected age
range of reported first concerns, and given diagnostic age.
There was no significant difference between the Positive
group (mean = 10.3 years, SD = 6.7) and the Less Positive
group (mean = 9.6 years, SD = 5.7) on this variable.
Attitudes and factors: family characteristics
Group comparisons of demographic and parent character-
istics indicated that parents in the Less Positive group were
less likely to report that their children had ID compared
with the Positive attitude group. There were no differences
between the two attitude groups in any other parent or
child characteristics. A sub-sample (n = 138) of parents
reported that they either had an autism diagnosis or sus-
pected that they were autistic. Direct comparison of this
sub-group with the rest of the sample showed that parents
self-identifying as autistic in this way were neither more
nor less likely to declare positive attitudes to autism
research than the rest of the sample (p = 0.48).
Attitudes and factors: access to services
Table 2 illustrates the frequency with which parents
accessed various different kinds of education and health
services, together with their mean ratings for those ser-
vices. The Positive attitude group reported accessing sig-
nificantly more services and also gave significantly higher
quality ratings for support services. There was also a near-
significant group difference in ratings of intervention ser-
vices, again with the Positive group rating these more
highly. When analysing based on Positive versus Negative
attitude groups, the difference in number of services
accessed remained significant in the same direction.
However, comparing these groups, quality ratings for sup-
port and intervention services did not differ (both
p > 0.20), but quality ratings for education services dif-
fered significantly (Positive mean = 2.5; Negative
mean = 1.9; t (574) = 1.91, p = 0.05).
To further explore the impact of receiving many versus
few services on attitudes, we compared the group receiv-
ing services in the lowest quartile (0 services, n = 355)
versus the top quartile (5 services or more, n = 296). A
Fisher’s exact test revealed that the group receiving few-
est services was more likely to be Less Positive about
research on early autism than the group receiving most
services (odds ratio (OR) = 0.43, confidence interval
(CI) = 0.25–0.73, p < 0.001).
Expectations about research: the role of
In a specific survey item, parents were asked to indicate
whether provision of an intervention component was
Table 2. Self-rated autism knowledge, frequency of service access and service quality ratings by attitude group.
Positive attitude Less positive attitude Group comparison
Self-reported knowledge of autism
(1–3 scale)
Mean (SD) 2.6 (0.6) 2.6 (0.6) t (125.62) = 0.33, p = 0.74
Self-reported knowledge on early
autism (1–3 scale)
Mean (SD) 2.2 (0.8) 2.3 (0.8) t (118.18) = 0.15, p = 0.88
Number of services accessedaMean (SD) 2.8 (2.5) 2.3 (2.5) t (166.39) = 2.10, p = 0.04*
Rating of services
(1–3 scale)
Support Mean (SD) 2.6 (1.0) 2.3 (1.0) t (121.42) = 1.99, p = 0.05*
Education Mean (SD) 2.7 (1.0) 2.8 (1.1) t (118.54) = 0.85, p = 0.39
Intervention Mean (SD) 2.6 (1.0) 2.3 (1.0) t (122.75) = 1.87, p = 0.06
SD: standard deviation.
aRange 0–9 for both groups.
*Significant differences at p < 0.05.
Fletcher-Watson et al. 7
essential for involvement in a research study. Almost 50%
of the parents (516) indicated that intervention is an essen-
tial part of involvement, and 342 parents answered that
intervention is not an essential part. Only 83 parents indi-
cated that they would prefer studies not to have an inter-
vention component.
The parents were also asked to rank what information
is most important in making a decision about participat-
ing in an early autism research study: these data are pre-
sented in Figure 3, ranking from 1 = most important to
7 = least important. These rankings demonstrate that the
presence of an intervention component is ranked as less
important in decision-making about research participa-
tion relative to more overarching factors such as what
the study involves for family members. Also high-rank-
ing is the science behind the research, indicating that
this parent sample is concerned about the academic sta-
tus of research not just the impact for them personally.
These results indicate that parents consider a number of
factors to have value in decision-making about research
It is possible that the relatively low ranking given to
intervention in this item belies some differences between
sub-groups within the sample and may be explained by
variability in existing intervention and support access.
Table 3 illustrates differences in the mean ranking of the
importance of intervention as a factor influencing partici-
pation in research studies according to self-reported qual-
ity and quantity of services accessed by the families.
These data show that the need for an intervention compo-
nent in a research study is not highly influenced by exist-
ing service access. However, there is a significant overlap
between parents who consider intervention to be an essen-
tial research study component and those who rate support
services as high quality. This could indicate a general
endorsement of the value of autism support services.
Expectations about research: measurement
and communication preferences
Parents were asked to indicate what type of information
they would allow research studies to collect about their
child and themselves. Each listed type of information was
rated on a 4-point scale: definitely yes, probably yes, prob-
ably not and definitely not. A separate check box was
available if parents did not know what collecting this
information would imply. Frequency counts (number and
proportion selecting definitely yes or probably yes) for
acceptability of each type of data are shown in Table 4.
These show that there is a general high acceptability for
all listed types of data, but this lowers slightly for medical
procedures such as blood tests and brain scans. Comparison
of parent acceptability ratings with the Eurosibs protocol
shows that the least acceptable part of the protocol is the
brain scan. All other measures in the protocol are rated as
acceptable by about 80% or more of our parent sample,
including DNA sampling.
We also asked parents about preferred forms of con-
tact initially and during a research study. Parents selected
all acceptable means of contact from a predefined list of
communication modes. Frequency counts for each com-
munication mode are shown in Figure 4(a) and (b).
These indicate that participants value convenience (email
communication) over the opportunity to have a discus-
sion afforded by a personal meeting or phone call. In
addition Table 5 provides information on where and how
parents would prefer assessments to take place. These
show that parents would prefer that assessments are face-
to-face, and there is no clear preference for home,
research lab or clinic visits.
The majority of parents (84.9%) further indicated that
after data collection researchers should provide full disclo-
sure of all child assessments.3 Considerably fewer parents
Figure 3. Mean rankings of the relative importance of different factors when deciding whether to enrol in research.
Items are shown in order of importance, based on group mean, with the most important item at the top (lowest mean score).
8 Autism 00(0)
indicated that information should be passed on only when
there is cause for concern, either to parents (17.8%) or to
via the family doctor (8.1%). Only 0.3% of the participants
selected Do not tell parents anything.
This study aimed to capture data from a large, interna-
tional, online survey of parents of children with autism in
order to understand factors which shape attitudes to
research and the expectations of potential participants. The
specific focus was on the sub-field of early autism research
which frequently employs longitudinal methodologies,
recruiting families having an autistic child and a baby in
order to chart the development of the younger sibling.
These studies amplify and extend the usual repertoire of
ethical issues in research and therefore are important areas
in which to gain insight into community opinion. In this
analysis, we focused on parents of children on the autism
spectrum, aiming to extract practical recommendations for
Table 3. Quantity and quality of services accessed by importance of intervention in research.
Intervention component in research study Group comparison
Essential Not essential Would rather not
have it
No. of autism services Mean (SD) 2.63 (2.44) 2.91 (2.50) 2.80 (2.40) F (2,939), p = 0.254
Quality of autism support (1–4 scale) Mean (SD) 3 (1) 2 (1) 2 (1) F (2,545), p = 0.029*
Quality of intervention (1–4 scale) Mean (SD) 3 (1) 2 (1) 2 (1) F (2,534), p = 0.399
Quality of education (1–4 scale) Mean (SD) 3 (1) 3 (1) 3 (1) F (2,540), p = 0.830
SD: standard deviation.
*Significant differences at p < 0.05.
Table 4. Which types of research data are acceptable to parents?
Information collected Parents responding
‘yes’, N (%)
Presence on Eurosibs common
Child Blood sample 782 (74.8)
DNA (cheek) 876 (83.7)
Brain scans (MRI) 735 (70.3) Yes, MRI and DTI
Eye tracking 900 (86.0) Yes, multiple tasks
Parent–child play video 902 (86.2) Yes
Researcher–child play video 897 (85.8)
Medical records 895 (85.6) Yes, by questionnaire
Diagnostic assessments 922 (88.1) Yes, ADOS-2
Ability tests 928 (88.7) Yes, Mullen Scales of Early Learning
Other play-based tests 926 (88.5)
Physical Not asked Yes, anthropometry, pupil reflex
EEG Not asked Yes
Parent Blood sample 894 (85.5)
DNA (cheek) 894 (85.5)
Brain scans (MRI) 819 (78.3)
Eye tracking 827 (79.1)
Parent–child play video 900 (86.0) Yes
Questionnaires about you 846 (80.9)
Questionnaires about your child 849 (81.2) Yes, multiple measures
Family medical history report form 828 (79.2) Yes
Medical records 864 (82.6) Yes, intervention history
Diagnostic assessment 901 (86.1)
Autism characteristics 828 (79.2)
Ability tests 891 (85.2)
Other puzzle-based tests 889 (85.0)
MRI: magnetic resonance imaging; DTI: diffusion tensor imaging; ADOS-2: Autism Diagnostic Observation Schedule, Second Edition; EEG:
Fletcher-Watson et al. 9
the research community who wish to recruit from and
work with this group, and their children.
Our analysis hinged on responses to a single question
directly asking participants whether early autism research
should be done. Responses were overwhelmingly positive
with a large majority of the sample selecting Yes definitely
as their answer. This led to a difficult analysis decision: we
chose to split the groups in a way which conflated responses
ranging from less positive to actively negative, in order to
avoid an even more dramatic disparity in group sizes.
However, when comparing positive and negative attitude
groups, we were able to replicate the patterns of data in
almost every case. One exception was when probing the
relation between attitude and access to services but even
here, while the individual item results were different, both
analyses revealed an association between lower access to,
and quality ratings of, services in less-favourable attitude
Why were attitudes so positively skewed? This is
doubtless partly a function of the fact that all of our sample
self-selected to participate in this research project – albeit
a far less intensive experience than most early autism
research studies. Indeed, we cannot rule out the possibility
that some participants may have been enrolled in an early
autism study themselves. However, other factors might
also have contributed to this pattern. A wider analysis of
the same survey data demonstrates that people in the
autism community endorse goals of this research including
determining the genetic origins and earliest behavioural
signs of autism. In the current, specific analysis of parent
data, we report on the lengthy temporal gap between par-
ents’ first concerns about their child and their eventual
diagnosis. It is not possible to speculate as to whether this
Figure 4. Preferred contact method of parents of autistic children enrolled in a research study: a) initial contact and b) continued
Table 5. Where and how would you agree to assessments
taking place?
Place Parents responding Yes, N (%)
Home visits 741 (70.8)
Visit to a university 734 (70.2)
Visit to a hospital 766 (73.2)
By telephone 579 (55.4)
By post 684 (65.4)
10 Autism 00(0)
gap is due to clinical waiting times or other factors – such
as parents being slow to approach clinical services. But
regardless, the subjective experience of the parent seems
to be that they suspected their child was autistic long
before this was confirmed. It is easy to see from this per-
spective why attitudes to early autism research might be so
widely supported by parents.
Despite the overwhelmingly positive stance of our
respondents, it was still possible to determine a series of
factors which were related to attitudes, including rated
quality of services, and amount of services accessed. This
relation indicates that those parents who have not had posi-
tive experiences with local autism services may view the
research community through the same lens. This is disap-
pointing, as one intention among researchers is to build
evidence which can contribute to quality service delivery.
If families are reluctant to engage with research, it will
continue to be difficult to deliver empirically supported
In addition, we probed attitudes by asking partici-
pants to respond to a series of focus group statements.
These reveal significant agreement between participants
on issues relating to participation in research studies.
The sample strongly endorses the importance of sharing
information between researchers and participants, and
the need for responsivity to parents’ changing attitudes
during a longitudinal study. However, in other cases,
parents provide more variable responses. There were dif-
ferences in opinion about the meaning of autism, as evi-
denced by variability in attitudes to the impact of a
diagnosis, the importance of early diagnosis, and to use
of ‘at-risk’ language, also found in our previous report
on differences between stakeholder groups (Fletcher-
Watson et al., 2017). These findings are good news for
researchers in the field. They suggest that although there
are differences between parents on thoughts about
autism, when considering the more specific issue of
engagement with a research project there is greater con-
sensus. This should mean that we can not only extract
clear guidelines for our research practices, but we are
also able successfully to capture variability within that
community in our research.
Responses to other focus group statements suggest that
some areas of concern in the academic community may
not be reflected among parents. For example, the majority
of parents were relatively neutral when asked about prefer-
ence to work with clinicians rather than academics and
showed similar ambivalence over the question of whether
an older child, already having an autism diagnosis, might
be neglected in studies with infant siblings. On the other
hand, parents did tend to agree that taking part in a longi-
tudinal study of early autism might influence parenting –
highlighting the profound responsibility researchers have
to their participating families even when active interven-
tion is not included in the project.
Recommendations for researchers
Our data included a series of questions asking directly
about research participation. From these we can extract
specific recommendations for the field. It is clear that par-
ticipant burden is a key factor when parents decide whether
or not to enrol in research studies. Unfortunately, these
data cannot provide information about the upper limits of
acceptable burden, but we can see that parents prefer email
contact, perhaps because this mode of communication
requires less time and effort than (for example) responding
to a letter or engaging in a phone call. On the other hand,
parents seem to find face-to-face data collection appoint-
ments preferable to phone interviews or data collection by
post – and these are equally acceptable in home, university
or hospital settings. We speculate that this is because par-
ents prefer researchers and clinicians to get to know their
children in person and also because a personal appoint-
ment allows them to ask questions and get more informa-
tion. Of course, a participant preference for email contact
needs to be balanced against other factors including a
requirement that any confidential information be shared
via a secure route.
Our survey reveals opinions on the topic of intervention
which may seem at first glance to be conflicting. Whether
research studies incorporate an intervention component is
ranked sixth out of seven statements about reasons to par-
ticipate in the research project. On the other hand, when
asked directly whether intervention was an essential pre-
requisite for participation in a project, about half of parents
said yes. There are also high levels of agreement with a
focus group statement on the same topic. We interpret
these findings as an indication of the even greater impor-
tance of the personal impact of participation on the family.
Researchers should also note that we did not ask explicitly
about participation in randomised controlled trials. Thus,
we do not know whether parents responding to this survey
would participate in studies with an intervention compo-
nent, if there was a chance that they would not themselves
receive the intervention.
An unexpected finding was that the scientific basis of
the research ranked highly in parents’ list of priorities: sec-
ond, above both impact on the parent and overall time
commitment. Again, this is positive news for the academic
community as it suggests that stakeholders in autism
research are responsive to messages about the need for rig-
orous science. This may alleviate concerns over aspects
such as the ethics of randomised controlled trials, and the
acceptability of studies which only yield impact over a
long timeline and as part of a larger body of work. While
eliminating technical jargon and engaging with stakehold-
ers as equals is clearly essential for high quality research,
this finding indicates that researchers should not shy away
from placing their project into its scientific context and
sharing this with participants. Such information may be
Fletcher-Watson et al. 11
persuasive at the point of recruitment and also contributes
to wider goals regarding public understanding of science.
In terms of acceptable measures in a research context,
these positively disposed survey respondents were also
receptive to the majority of data collection techniques listed
in the survey. Our comparison between parents’ expecta-
tions and the common research protocol used in the Eurosibs
consortium (Table 4) highlights that, broadly, parents find
acceptable the measures used in early autism research to
collect information both on themselves and on their chil-
dren. Even intrusive methods such as blood samples, or sen-
sitive information such as DNA from cheek swabs and
access to medical records, were endorsed by the large
majority of parents. However, about a third of respondents
reported not finding brain scans for their children accepta-
ble. It is unclear whether this reflects a concern about the
time commitment associated with some brain scans, or wor-
ries over the possible impact of a scan on the developing
brain. Providing parents with accurate yet accessible infor-
mation and effectively communicating the rationale for the
use of such measures, as well as disseminating findings in
the community of stakeholders, may help to address such
concerns. Finally, there is growing interest in studying the
broader autism phenotype in parents of children with autism
(Sasson et al., 2013), and in our sample, most parents (79%)
would find it acceptable to be assessed for autism character-
istics in the context of early autism research.
Limitations and next steps
This study is limited by the potentially biased nature of
the sample who, by definition, are already positively dis-
posed towards research as evidenced by their participa-
tion in this survey. That said, taking part in an online
survey is very different from participation in an autism
siblings study and these data suggest a large pool of fami-
lies who are positive even about this sort of intensive
research process and well informed about the issues.
These survey data can necessarily only provide a superfi-
cial overview of attitudes and should be followed up with
targeted recruitment of a more varied sample (e.g. par-
ents of children diagnosed later in life; parents of autistic
adults) and more in-depth studies. In particular, we would
welcome qualitative explorations of the experiences of
families enrolled in sibling studies, and especially
research which aims to determine the attitudes of chil-
dren, with and without an autism diagnosis, who grew up
as a part of these cohorts. In addition, some key ethical
questions were not addressed in this study. For example,
we did not draw attention to the fact that many of the
infants enrolled in early autism studies are effectively
screened and may, in intervention studies, be offered pre-
emptive parent-mediated intervention, despite having no
developmental difficulties. Such ethical questions should
be presented to stakeholders in future studies.
Implications of the study
This work aims to explore within-group differences in par-
ent attitudes to early autism research. The overwhelmingly
positive disposition which was uncovered, while informa-
tive in itself, hampered this goal. However, individual
research teams should pay attention to the nuances of these
data, such as attitudes to the sharing of data between
researchers and families, or the need for long-running stud-
ies to responsive to changing family needs. We hope that
research teams will draw practical lessons from these find-
ings and that research into the perspectives of stakeholder
groups will be woven in to future studies in the field.
This research would not have been possible without the contribu-
tion of hundreds of parents, who we thank for taking part. The
authors recognise the contribution of research teams from across
Europe to data collection for this survey including: Fabio
Apicella, Bonnie Auyeung, Stepanka Beranova, Frederique
Bonnet-Brilhault, Ricardo Canal Bedia, Tony Charman, Natasha
Chericoni, Ines C Conceicao, Kim Davies, Teresa Faroni, Marie
Gomot, Emily Jones, Anett Kaale, Katarzyna Kapica, Rafal
Kawa, Anneil Kylliainen, Jeremy LeFort-Besnard, Joelle Malvy,
Sara Manso de Dios, Silvana Markovska-Simoska, Inbal Millo,
Natercia Miranda, Greg Pasco, Ewa Pisula, Marija Raleva,
Bernadette Roge, Synnve Schjolberg, Przemyslaw Tomalski,
Astrid M Vicente and Nurit Yirmiya.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship and/or publication of this
The author(s) disclosed receipt of the following financial support
for the research, authorship and/or publication of this article:
This work was supported by the European Co-operation in
Science and Technology (COST) Action BM1004 Enhancing the
Scientific Study of Early Autism (ESSEA).
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Appendix 1
Members of the working groups who contributed to this
research are as follows: Fabio Apicella, Bonnie Auyeung,
Stepanka Beranova, Frederique Bonnet-Brilhault, Ricardo
Canal Bedia, Tony Charman, Natasha Chericoni, Ines C
Conceicao, Kim Davies, Teresa Faroni, Marie Gomot,
Emily Jones, Anett Kaale, Katarzyna Kapica, Rafal Kawa,
Anneil Kylliainen, Jeremy LeFort-Besnard, Joelle Malvy,
Sara Manso de Dios, Silvana Markovska-Simoska, Inbal
Millo, Natercia Miranda, Greg Pasco, Ewa Pisula, Marija
Raleva, Bernadette Roge, Synnve Schjolberg, Przemyslaw
Tomalski, Astrid M Vicente and Nurit Yirmiya.
... Knowledge acquired from parents about their unique caregiving needs can be used to guide future interventions and support services. Third, engaging caregivers in the research process may help to ensure that research aims better align with the needs of children and families and can inform future research practices [12]. ...
... Parents are important to IDD research, not only in western, wealthy countries, but also in other middle-to-lower-income countries [12,15]. However, much behavioral science has been conducted in Western and industrialized countries and, as a result, tends to include participants from these countries [16]. ...
... Therefore, sometimes, many different research methods can complement each other and provide a more complete picture of the human behavior and psychology of interest (e.g., [24]). According to a recent large-scale survey, over 80% of parents of children with IDD deemed it acceptable to collect parental data using a variety of measurement tools such as DNA sampling, blood sample, video observations, medical records, ability tests, and eye tracking, among others [12]. Therefore, parents' lack of willingness should not be an obstacle for researchers to utilize various measurement tools. ...
Full-text available
Parents provide important insights into the psychology, behaviors, and activities of themselves and their children with intellectual and developmental disabilities (IDD). However, it is unknown how prevalent parental participation in IDD research is in general, nor the diversity of geographical locations and research methods of these studies with parental participation. The current review screened 7845 published works in 7 IDD-focused journals between 2010 and 2019. A total of 1519 articles, accounting for 19.37% of all screened works, included at least one parental measure. For each parental article, we coded the country/continent of authors/participants, measurement tools used to obtain data from parents (e.g., questionnaire, interview), and the focus of the measurement (i.e., about parents, child, or both). We found an increasing number and proportion of studies involving parents between 2010 and 2019. Most studies (76%) came from North America and Europe, whereas other continents such as Africa and South America represented less than 1% of all studies reviewed. The predominant (88.0%) measurement tools were questionnaires and interviews. More studies were about both the children and the parents (42.6%) than either only the children (31.3%) or only the parents (26.1%). Together, our review showed a somewhat limited diversity in parental participation in IDD research and these findings have important implications for future research.
... L'étude comporte également des biais de recrutement : concernant l'échantillon d'enfants au développement typique, seuls les parents équipés d'une connexion internet et à l'aise avec les supports numériques pouvaient participer à l'étude. Concernant l'échantillon d'enfants autistes, il existe un biais inhérent à la disposition des parents d'enfants autistes à participer aux recherches(Fletcher-Watson, Larsen et al., 2019). ...
Contexte : La qualité de vie (QdV) des personnes autistes devrait être la cible ultime des interventions. Cette thématique de recherche reste peu développée, particulièrement chez les enfants autistes d’âge préscolaire.Objectifs : Cette étude vise à (a) développer un module adapté aux enfants autistes d’âge préscolaire destiné à être passé avec l’échelle de QdV Pediatric Quality of Life Inventory (PedsQLTM 4.0, version 2-4 ans), (b) évaluer les qualités métrologiques du PedsQLTM 4.0 (version 2-4 ans), dont la traduction française n’a pas été validée, et du module « autisme », et c) explorer les facteurs pouvant influencer la QdV des enfants autistes de ce groupe d’âge. Méthodes : Dix adultes autistes verbaux ont participé à un entretien semi-directif questionnant les critères qu’ils estimaient importants pour que leur vie soit satisfaisante lorsqu’ils étaient enfants. Une analyse de contenu thématique a fourni une première banque d’items pour le module « autisme ». Celle-ci a ensuite été évaluée par un panel d’experts et pré-testée auprès de dix parents d’enfants autistes. 279 parents d’enfants au développement typique d’âge préscolaire ont complété le PedsQLTM 4.0, et 157 parents d’enfants autistes du même âge ont rempli le PedsQLTM 4.0 ainsi que le module « autisme ». L’âge et le genre du parent participant et de leur enfant, l’état civil, le niveau d’éducation et la profession du parent, le lieu de résidence et la composition de la fratrie ont été récoltés auprès des deux échantillons. Le niveau de flexibilité psychologique des parents d’enfants autistes, ainsi que le tempérament de leur enfant ont été respectivement mesurés à l’aide du questionnaire d’acceptation et d’action (AAQ-II) et de l’outil « Émotivité, Activité et Sociabilité » (EAS).Résultats : L’analyse de contenu des entretiens a révélé quatre thèmes majeurs : intérêts, régularité de l’environnement, perception sensorielle et relations sociales. Ce dernier a été subdivisé en deux thèmes (interactions sociales et communication) et une première banque de 44 items découpés en cinq dimensions a pu être constituée. Suite à l’évaluation du panel d’experts et au pré-test, les 27 items retenus constituent le module opérationnel d’évaluation de la QdV adaptée à l’enfant autiste d’âge préscolaire perçue par le parent, et s’utilise conjointement avec le PedsQLTM 4.0 (version 2-4 ans). L’étude psychométrique (a) a montré que le PedsQLTM 4.0 pouvait être utilisé de façon fiable auprès des enfants français autistes ou ayant un développement typique, (b) a conduit à remanier la version opérationnelle du module « autisme » constitué en définitive de 24 items répartis en trois dimensions. L’analyse des facteurs a principalement révélé que la QdV des enfants autistes d’âge préscolaire est associée négativement à son émotivité, cette relation étant influencée par la flexibilité psychologique du parent.Conclusion : Cette étude renseigne sur la QdV des enfants autistes d’âge préscolaire. Elle fournit un outil de mesure de la QdV adaptée à cette population. Celui-ci pourra être utilisé par les cliniciens pour évaluer les interventions précoces qu’ils mettent en œuvre. Enfin, les résultats de cette recherche permettent de mieux comprendre les facteurs d’influence de la QdV des jeunes enfants autistes, en ouvrant notamment des pistes d’intervention auprès de leurs parents.
... Research that explores new program models and how best to adapt programs for this population can help fill the gap in the literature and add to existing intervention therapies. 51 Pilot programs like KNF4ALL may strengthen our understanding of best practices in weight management and lifestyle change, help pave the way for future research that is inclusive of this unique population, and bring equity to those in low-income communities. 52−55 Future programs seeking to adapt the KNF curriculum or similar programs for children with ASD might consider beginning the cohort with parent focus groups to inform the development of a tailored curriculum that both addresses major concerns related to child feeding and mealtime behaviors and support their child's unique social skill levels. ...
Objective To evaluate the adaptation and implementation of an existing, evidence-based nutrition program for children with autism and their parents. Methods Children aged 7–12 years with autism and their parent participated in 6 weekly sessions. Recruitment, intervention, and data collection took place in a community health center in an urban area. Results Of the 50 referred participants, 38% attended the first classes, and 26% completed the program. Families and staff expressed satisfaction; parents reported increased physical activity, fruit, and vegetable intake in their children. Parents also desired continued learning and individualized recommendations. Conclusions and Implications Adapting family-centered nutrition programs can positively influence diet behaviors in children with autism. As many children with autism battle with obesity, the findings from this pilot provide important insight into supporting these families and can further inform the development of evidence-based practices currently lacking for children with autism and their families.
... Research on the perspectives of autistic people, family members, practitioners and researchers has revealed differing views about the extent to which research is inclusive of the voices of different stakeholders (Pellicano, Dinsmore, & Charman, 2014a). Key themes uncovered from investigating non-researcher views relate to scepticism about the motivation for invitations to participate in research and frustration with a failure of researchers to make their findings accessible and to transform their research into something of tangible benefit to stakeholders (Fletcher-Watson, Larsen, & Salomone, 2017;Pellicano et al., 2014a). Thus, initiatives such as the Participatory Autism Research Collective (PARC, 2018b) and #Aut2Engage (CRAE, 2018) aim to establish a crossdiscipline dialogue between autistic voices, with the important emphasis that agenda for research are autistic-led. ...
Research on autism, which is defined as a life-long developmental disability affecting social interaction, has focussed predominantly on how autistic individuals perceive and interact with others with less emphasis on the perspectives of their interactional partners. Yet autistic viewpoints have highlighted how other people are part of a two-way breakdown in interaction originating from differences between people rather than the deficit of any one individual, a phenomenon known as the double empathy problem. A gap therefore exists in the literature in terms of understanding how autistic sociality (i.e. the range of social opportunities possible for a given individual on the spectrum) is shaped by different interactional partners. This thesis examines the double empathy problem in three interactional contexts. Study 1 examines relationships between autistic people and their family members through focussing on perspective-taking, the ability to impute mental states to others. In light of prior research where autistic abilities have been assessed using abstract scenarios, Study 1 implements a two-way measure of perspective-taking which considers both sides of 22 real-life relationships (n=44) consisting of autistic adults and their family members, to understand how autistic people are seen by familiar others as well as vice versa. It uses a mixed-methods approach, where members of each dyad were individually asked about 12 topics, providing quantitative scores and qualitative explanation of their rating of Self, their rating of their partner, and their predicted rating by their partner. Comparison of perspectives provided a means for detecting misunderstandings and their underlying rationale. The contribution of Study 1 is that it shows perspective-taking is two-sided: family members can be biased in underestimating the perspective-taking of their autistic relatives, while autistic adults are aware of being negatively viewed despite disagreeing with such views. Study 2 examines interactions between autistic adults (n=30) partaking in a naturally occurring activity of video-gaming at a charity. It is a qualitative study using participant observation, with each conversational turn systematically rated in terms of coherence, affect and symmetry to identify the key features of neurodivergent intersubjectivity, the process through which autistic people build shared understanding in their own non-normative ways. The contribution of Study 2 is to identify two forms of neurodivergent intersubjectivity which enable shared understanding to be achieved, but which have traditionally been viewed as undesirable from a normative social viewpoint: a generous assumption of common ground that, when understood, lead to rapid rapport, and, when not understood, resulted in potentially disruptive utterances; and a low demand for coordination that ameliorated many challenges associated with disruptive turns. Study 3 examines interactions involving lay people (n=256) who believe they are interacting with an autistic partner through an online collaborative game, when in fact they are playing with an intelligent virtual agent (IVA) who behaves the same way for all participants. Its contribution is methodological as it develops a new application for simulating interactions in experimental research called Dyad3D. Study 3 uses Dyad3D to explore how disclosure of an autism diagnosis by the IVA affects social perception and social behaviour in comparison to a disclosure of dyslexia and a condition where there is no diagnostic disclosure. Combined with a post-game questionnaire, Study 3 triangulates self-reported (quantitative rating scales and qualitative explanation) and behavioural measures (quantitative scores of actions within the game) to understand the interplay of positive and negative discrimination elicited through using the label of autism. It highlights that diagnostic disclosure of autism leads to significant positive bias in social perception when compared to a disclosure of dyslexia or a no disclosure condition; yet participants are not as helpful towards the autistic IVA as they think they are, indicating a potential bias in helping behaviour. The thesis takes an abductive methodological approach which integrates with a wider call for a more participatory model of research in the study of autism. Abduction is a form of reasoning which involves the iterative development of a hypothesis that holds the best explanatory scope for the underlying phenomena observed. It is inherently aligned with a participatory model of research because abduction involves the ongoing exploration of ideas that may originate from multiple sources (i.e. interactions with autistic people as well as research outputs). Taking a more holistic approach to the development of knowledge with autistic people which recognises the legitimacy of different claims to knowledge is important, because prior research in the field has often failed to critically reflect on researcherparticipant positionality and the principals underlying the development of research agenda. For this reason, the thesis details the participatory activities which surround and interconnect with the development of the three empirical studies. Overall the thesis contributes to understanding autistic sociality as a dynamic, interactionally shaped process. It reasons that autistic people have unrealised social potential, both in terms of imagining other perspectives (Study 1) and coordinating with others (Study 2). However, such social potential may not be easily recognised by other non-autistic people who may be biased in their assumptions about autism (Study 1 and Study 3). Consequently, the evidence presented in this thesis helps to explain some of the processes that underscore the double empathy problems reported in literature, including poor mental health (because autistic people are aware that they are misunderstood by others, see Study 1), employment prospects (because autistic social potential is under-recognised by others, see Study 1 and 3), and quality of life (because neurotypical standards of communication are not compatible with neurodivergent forms of intersubjectivity, see Study 2). The thesis therefore makes suggestions for how we design enabling environments which are sensitive to the dynamic factors that can enable autistic sociality to flourish.
... Historically, parents of autistic children have been listened to somewhat (Silverman and Brosco, 2007), and autistic people less so. Parents, like practitioners and third-sector workers, can advocate on behalf of their children and may often be stakeholders in research themselves -they should be included in the participatory agenda (Fletcher-Watson et al., 2017b). For this reason, we have referred throughout to engagement with both the autistic and the broader autism community. ...
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Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
Background: Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies. Objectives: Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi-site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. Methods: We included families of children, age 2-5 years, participating in SEED (n = 5696) during 2007-2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non-ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed-effects models to evaluate associations of each reason with group and demographics, using POP as reference. Results: Participants gave 1-5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49-3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61-2.29) or suspected ASD (OR 3.67, 95% CI 2.99-4.50) and non-ASD DD (OR 1.80, 95% CI 1.50-2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. Conclusions: We identified meaningful differences between groups in parent-reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.
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Parents of autistic children are routinely advised to raise them monolingually, despite potential negative effects of monolingualism and no evidence of harm from bilingualism. There is, however, limited research on this topic. This study explored experiences and perspectives of educational practitioners (‘practitioners’) and parents of Hebrew–English bilingual autistic children on bilingualism and monolingualism. Using interpretative phenomenological analysis, we explored the experiences of 22 parents and 31 practitioners using both oral and written interviews. The analysis revealed that religious continuity is a crucial factor in bilingual decision-making. Unexpectedly, both practitioners and parents felt that having to adopt a monolingual approach was unjust, in line with conceptions of forced monolingualism. This article recommends awareness training on community languages and research in other communities.
Background While end-user interest in digitally-mediated Social Story (SS) intervention for children on the autism spectrum is growing, research on the use of SSs in digital form is currently lacking. Aims This study aimed to investigate how digital-mediation can influence parents’ and practitioners’ attitudes towards the SS intervention as well as impact their perceived competence in their ability to administer the intervention. Methods and procedures This study used a convergent mixed-method design. Nineteen participants (ten practitioners and nine mothers) participated in two focus group sessions. Participants then engaged with a digitally-mediated SS and completed a pre- and post-engagement survey measuring attitude, competence and user experience with the intervention. Outcomes and results The mothers’ perceived competence ratings improved after engaging with digitally-mediated SSs. Mothers and practitioners also indicated that digitally-mediated SSs increased their perceived efficiency, while mothers felt it improved their autonomy and further empowered them as end-users. Conclusion and implications Digitally-mediated SS has the potential to effectively address challenges related to intervention implementation whilst also empowering further the end-user.
Purpose Children with Autism Spectrum Disorder (ASD) can demonstrate a preference for using digital technologies which can represent a relative strength within the autism community. Such a strength would have implications for digitally mediated interventions and support for autism. However, research to date has not developed a methodology for assessing the capabilities of minimally verbal children on the autism spectrum with intellectual disability (ID) to use digital technology. Design/methodology/approach Six minimally verbal children with ASD and ID undertook an accessible assessment that identified what capabilities for interacting with a digital tablet device they could and could not demonstrate. Twelve brief assessments were demonstrated, including turning on the device, adjusting the volume, operating the camera, touching, tilting and rotating the screen. Findings Participants could be assessed on their digital capabilities. In this study, participants could largely touch and swipe the screen effectively and leave the app, but could not tilt and rotate the screen nor turn on the digital tablet device. Research limitations/implications While the numbers were small, the findings indicate that the digital capabilities of this group can usefully be assessed. Future research can use such assessments to highlight how intervention effectiveness and support can be enhanced by matching the digital capacities of minimally verbal children with ASD and ID to technological support. This is a preliminary study and a greater understanding of children’s prior experiences with technology will better inform how and which digital capabilities develop. Originality/value This is the first study to assess a range of basic capabilities for using digital tablet devices in minimally verbal children with ASD and ID.
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Problem/condition: Autism spectrum disorder (ASD). Period covered: 2014. Description of system: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence of autism spectrum disorder (ASD) among children aged 8 years whose parents or guardians reside within 11 ADDM sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). ADDM surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by professional service providers in the community. Staff completing record review and abstraction receive extensive training and supervision and are evaluated according to strict reliability standards to certify effective initial training, identify ongoing training needs, and ensure adherence to the prescribed methodology. Record review and abstraction occurs in a variety of data sources ranging from general pediatric health clinics to specialized programs serving children with developmental disabilities. In addition, most of the ADDM sites also review records for children who have received special education services in public schools. In the second phase of the study, all abstracted information is reviewed systematically by experienced clinicians to determine ASD case status. A child is considered to meet the surveillance case definition for ASD if he or she displays behaviors, as described on one or more comprehensive evaluations completed by community-based professional providers, consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for autistic disorder; pervasive developmental disorder-not otherwise specified (PDD-NOS, including atypical autism); or Asperger disorder. This report provides updated ASD prevalence estimates for children aged 8 years during the 2014 surveillance year, on the basis of DSM-IV-TR criteria, and describes characteristics of the population of children with ASD. In 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which made considerable changes to ASD diagnostic criteria. The change in ASD diagnostic criteria might influence ADDM ASD prevalence estimates; therefore, most (85%) of the records used to determine prevalence estimates based on DSM-IV-TR criteria underwent additional review under a newly operationalized surveillance case definition for ASD consistent with the DSM-5 diagnostic criteria. Children meeting this new surveillance case definition could qualify on the basis of one or both of the following criteria, as documented in abstracted comprehensive evaluations: 1) behaviors consistent with the DSM-5 diagnostic features; and/or 2) an ASD diagnosis, whether based on DSM-IV-TR or DSM-5 diagnostic criteria. Stratified comparisons of the number of children meeting either of these two case definitions also are reported. Results: For 2014, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. Overall ASD prevalence estimates varied among sites, from 13.1-29.3 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and race/ethnicity. Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white (henceforth, white) children compared with non-Hispanic black (henceforth, black) children, and both groups were more likely to be identified with ASD compared with Hispanic children. Among the nine sites with sufficient data on intellectual ability, 31% of children with ASD were classified in the range of intellectual disability (intelligence quotient [IQ] <70), 25% were in the borderline range (IQ 71-85), and 44% had IQ scores in the average to above average range (i.e., IQ >85). The distribution of intellectual ability varied by sex and race/ethnicity. Although mention of developmental concerns by age 36 months was documented for 85% of children with ASD, only 42% had a comprehensive evaluation on record by age 36 months. The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity. For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5% and approximately 86% overlap between the two case definitions (kappa = 0.85). Interpretation: Findings from the ADDM Network, on the basis of 2014 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD among children aged 8 years in multiple communities in the United States. The overall ASD prevalence estimate of 16.8 per 1,000 children aged 8 years in 2014 is higher than previously reported estimates from the ADDM Network. Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States. Consistent with reports from previous ADDM surveillance years, findings from 2014 were marked by variation in ASD prevalence when stratified by geographic area, sex, and level of intellectual ability. Differences in prevalence estimates between black and white children have diminished in most sites, but remained notable for Hispanic children. For 2014, results from application of the DSM-IV-TR and DSM-5 case definitions were similar, overall and when stratified by sex, race/ethnicity, DSM-IV-TR diagnostic subtype, or level of intellectual ability. Public health action: Beginning with surveillance year 2016, the DSM-5 case definition will serve as the basis for ADDM estimates of ASD prevalence in future surveillance reports. Although the DSM-IV-TR case definition will eventually be phased out, it will be applied in a limited geographic area to offer additional data for comparison. Future analyses will examine trends in the continued use of DSM-IV-TR diagnoses, such as autistic disorder, PDD-NOS, and Asperger disorder in health and education records, documentation of symptoms consistent with DSM-5 terminology, and how these trends might influence estimates of ASD prevalence over time. The latest findings from the ADDM Network provide evidence that the prevalence of ASD is higher than previously reported estimates and continues to vary among certain racial/ethnic groups and communities. With prevalence of ASD ranging from 13.1 to 29.3 per 1,000 children aged 8 years in different communities throughout the United States, the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD.
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Background: Interventions found to be effective in research settings are often not as effective when implemented in community settings. Considering children with autism, studies have rarely examined the efficacy of laboratory-tested interventions on child outcomes in community settings using randomized controlled designs. Methods: One hundred and thirteen children with autism enrolled in public early intervention classrooms in low resource neighborhoods were randomized to Joint Attention, Symbolic Play, Engagement, and Regulation (JASPER) intervention or treatment as usual waitlist for 10 weeks with 1-month follow-up. Results: Teaching assistants delivered JASPER at adequate fidelity. Children randomized to JASPER demonstrated significant gains over treatment as usual in core developmental outcomes of joint engagement, joint attention, and play skills that were maintained at follow-up. Conclusions: Supervised teaching assistants delivered JASPER intervention with a range of toddlers with autism leading to significant gains in developmental outcomes.
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Background: It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods: PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2-4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42-5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings: 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI -0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI -0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI -0·23 to 0·53). Interpretation: The results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory. Funding: Medical Research Council.
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Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of ‘at-risk’ language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.
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The goal of early autism screening is earlier treatment. We pilot-tested a 12-week, low-intensity treatment with seven symptomatic infants ages 7-15 months. Parents mastered the intervention and maintained skills after treatment ended. Four comparison groups were matched from a study of infant siblings. The treated group of infants was significantly more symptomatic than most of the comparison groups at 9 months of age but was significantly less symptomatic than the two most affected groups between 18 and 36 months. At 36 months, the treated group had much lower rates of both ASD and DQs under 70 than a similarly symptomatic group who did not enroll in the treatment study. It appears feasible to identify and enroll symptomatic infants in parent-implemented intervention before 12 months, and the pilot study outcomes are promising, but testing the treatment's efficacy awaits a randomized trial.
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Autism Spectrum Disorders (ASDs) are neurodevelopmental disorders characterized by impairments in social interaction and communication, and the presence of restrictive and repetitive behaviors. Symptoms of ASD likely emerge from a complex interaction between pre-existing neurodevelopmental vulnerabilities and the child's environment, modified by compensatory skills and protective factors. Prospective studies of infants at high familial risk for ASD (who have an older sibling with a diagnosis) are beginning to characterize these developmental pathways to the emergence of clinical symptoms. Here, we review the range of behavioral and neurocognitive markers for later ASD that have been identified in high-risk infants in the first years of life. We discuss theoretical implications of emerging patterns, and identify key directions for future work, including potential resolutions to several methodological challenges for the field. Mapping how ASD unfolds from birth is critical to our understanding of the developmental mechanisms underlying this disorder. A more nuanced understanding of developmental pathways to ASD will help us not only to identify children who need early intervention, but also to improve the range of interventions available to them.
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched. © The Author(s) 2015.
We prospectively examined evidence for the sustained effects of early intervention based on a follow-up study of 39 children with ASD who began participation in a randomized clinical trial testing the effectiveness of the Early Start Denver Model (ESDM) at age 18 to 30 months. The intervention, conducted at a high level of intensity in-home for 2 years, showed evidence of efficacy immediately posttreatment. This group of children was assessed at age 6 years, 2 years after the intervention ended, across multiple domains of functioning by clinicians naive to previous intervention group status. The ESDM group, on average, maintained gains made in early intervention during the 2-year follow-up period in overall intellectual ability, adaptive behavior, symptom severity, and challenging behavior. No group differences in core autism symptoms were found immediately posttreatment; however, 2 years later, the ESDM group demonstrated improved core autism symptoms and adaptive behavior as compared with the community-intervention-as-usual (COM) group. The 2 groups were not significantly different in terms of intellectual functioning at age 6 years. Both groups received equivalent intervention hours during the original study, but the ESDM group received fewer hours during the follow-up period. These results provide evidence that gains from early intensive intervention are maintained 2 years later. Notably, core autism symptoms improved in the ESDM group over the follow-up period relative to the COM group. This improvement occurred at the same time that the ESDM group received significantly fewer services. This is the first study to examine the role of early ESDM behavioral intervention initiated at less than 30 months of age in altering the longer-term developmental course of autism. Copyright © 2015 American Academy of Child and Adolescent Psychiatry. Published by Elsevier Inc. All rights reserved.
Background: Although increasing numbers of children diagnosed with Autism Spectrum Disorders (ASD) are now entering adolescence and adulthood, there is limited research on outcomes post childhood. A systematic review of the existing literature was conducted. Method: PsycINFO, PubMed, MedLine and CINAHL were systematically searched using keywords related to ASD and adolescent and adult outcomes. Studies of individuals diagnosed with ASD in childhood and followed up into adulthood were identified and reviewed. Only studies with samples sizes >10, mean age at outcome >16 years and at least one previous assessment in childhood (<16 years) were included. Results: Twenty-five studies meeting criteria were identified. Reported outcomes in adulthood were highly variable across studies. Although social functioning, cognitive ability and language skills remained relatively stable in some studies, others reported deterioration over time. Adaptive functioning tended to improve in most studies. Diagnosis of autism or ASD was generally stable, although severity of autism-related behavioural symptoms was often reported to improve. Childhood IQ and early language ability appeared to be the strongest predictors of later outcome, but few studies examined other early variables associated with adult functioning. Discussion: Implications of the findings are discussed in relation to methodological challenges in longitudinal outcome research and future research directions.