Autism – Impact on clinical practice and raising awareness
Submitting InstitutionOpen University
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeSocietal
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
Dr Rosa Hoekstra engages in research on the biological, cultural and
cognitive aspects of autism, and in communicating the findings of these
studies to a wider audience. Her involvement in developing a rapid
quantitative instrument of autistic traits has aided diagnostic practice.
Through The Open University's OpenLearn website and open educational
resources associated with the Health Education And Training (HEAT)
programme, Hoekstra contributes to raising autism awareness both in the UK
Dr Hoekstra's autism research is multidisciplinary, with topics ranging
from assessing the genetic and environmental influences on autism and
autistic traits to exploring cognitive phenotypes of autism to studying
autism in Ethiopia. Her twin, family and questionnaire development studies
link the variability in genetic and environmental processes with cognitive
and behavioural outcomes in autism, leading to a better understanding of
the heterogeneity inherent within the autism spectrum. In her more recent
work in Ethiopia, she examined how to increase autism awareness using a
low cost and scalable method that reaches the most under-served
communities in the world. Her research efforts include:
- Study of the aetiology of autism using twin and family designs. She
conducted the first twin family study of autistic traits in a non-child
sample, providing evidence that autistic traits are under substantial
genetic influence in late adolescence [3.3].Her studies in twins and
families provide evidence for the strong genetic influences on autism
and autistic traits (see [3.5] for a review) and show that sub-clinical
autistic traits are more frequently observed in first degree relatives
of people with autism [3.6]. During part of this work, Hoekstra was
supported by a fellowship awarded by the Netherlands Organisation for
Scientific Research (€87,480).
- Dr Hoekstra's research has contributed to the development and
translation of the Autism- spectrum Quotient (AQ), a quantitative
measure to assess individual differences in autistic traits. The
original measure was developed by Baron-Cohen and colleagues. Hoekstra
was involved in developing the adolescent version of this questionnaire
[3.1]. She also led the validation of the Dutch translation [3.2] and
the development of an abridged version of the questionnaire — the
- Hoekstra received $199,750 funding from the USA-based charity Autism
Speaks to conduct a study of the effectiveness of mental health training
for rural health extension workers. The project aims to raise autism
awareness and decrease stigma related to mental health problems in rural
Ethiopia. Rural health extension workers in Ethiopia provide essential
basic health care services to a population of over 80 million people.
The Health Education And Training (HEAT) upgrading programme was
developed by The Open University in collaboration with the Ethiopian
Federal Ministries of Health and Education, UNICEF and the African
Medical and Research Foundation (AMREF). Hoekstra and colleagues
evaluated the effectiveness of the mental health part of the HEAT
curriculum by interviewing health extension workers who had just
completed the training and comparing their knowledge, attitudes and
practices with health workers who were not yet trained. The first
findings indicated that trained health workers had fewer stigmatising
attitudes and incorrect beliefs regarding the causes and treatment of
autism compared to untrained health workers. However, there were several
remaining gaps in the knowledge of HEAT-trained health workers [5.5]. In
addition, Hoekstra and colleagues surveyed parents with a child with
autism in Ethiopia (Nigussie et al., IMFAR autism conference 2013) and
interviewed stakeholders involved in autism service provision in
Ethiopia (Tekola et al., Autism Europe conference, 2013); both studies
indicated the lack of diagnostic and educational service provision and
high levels of stigma experienced by families affected by autism.
References to the research
1. Baron-Cohen, S., Hoekstra, R.A., Knickmeyer, R. and Wheelwright, S.
(2006) `The Autism- Spectrum Quotient (AQ) — adolescent version', Journal
of Autism and Developmental Disorders, vol. 36, pp. 343-350.
2. Hoekstra, R.A., Bartels, M., Cath, D.C. and Boomsma, D.I. (2008)
`Factor structure, reliability and criterion validity of the
Autism-spectrum Quotient (AQ): a study in Dutch population and patient
groups', Journal of Autism and Developmental Disorders, vol. 38,
3. Hoekstra, R.A., Bartels, M., Verweij, C.J.H. and Boomsma, D.I. (2007)
`Heritability of autistic traits in the general population', Archives
of Paediatrics & Adolescent Medicine, vol. 161, pp. 372-337.
4. Hoekstra, R.A., Vinkhuyzen, A.A., Wheelwright, S., Bartels, M.,
Boomsma, D.I., Baron-Cohen, S., Posthuma, D. and van der Sluis, S. (2011)
`The construction and validation of an abridged version of the
autism-spectrum quotient (AQ-Short)', Journal of Autism and
Developmental Disorders, vol. 41, pp. 589-596.
5. Ronald, A. and Hoekstra, R.A. (2011) `Autism spectrum disorders and
autistic traits: a decade of new twin studies', American Journal of
Medical Genetics Part B, vol. 156B, pp. 255-274.
6. Sucksmith, E., Allison, C., Baron-Cohen, S., Chakrabarti, B. and
Hoekstra, R.A. (2013) `Empathy and emotion recognition in people with
autism, first-degree relatives, and controls', Neuropsychologia,
vol. 51, pp. 98-105.
2012-2014. Autism Speaks $199,750. Title: Increasing autism awareness in
Ethiopia: The HEAT+ project. PI: Hoekstra, R.A and Long, L-A., Davey,
G.C.B., Hanlon, C., Fekadu, A.
2007-2009. Netherlands Organisation for Scientific Research € 87,480.
Title: Refining the autism phenotype: parent and twin studies of the
Autism-Spectrum Quotient and cognitive endophenotypes. PI: Hoekstra, R.A.
Details of the impact
Hoekstra's autism research is making an impact on several levels:
- clinical practice (through the development of a rapid quantitative
instrument of autistic traits)
- by raising awareness, both in the UK and in the Netherlands (through a
book, conference talks, articles and interviews in the popular media
such as the New Scientist and the BBC)
- by raising mental health and autism awareness in Ethiopia (Hoekstra's
mental health research project).
Clinical impact and impact on families affected by autism
The Autism-spectrum Quotient (AQ) is an instrument to assess autistic
traits, both in the research context and in the clinic. According to the
Dutch national psychiatry consortium for autism spectrum disorders in
adults [5.1], the Dutch translation of the AQ (validated by Hoekstra et
al., [3.2]) is the most commonly used instrument in clinical practice to
aid autism spectrum diagnoses in adults in the Netherlands.
The British National Collaborative Centre for Mental Health (NCCMH)
developed the UK NICE guidelines for autism spectrum disorders in adults
simultaneously and in collaboration with the team devising the
multidisciplinary guidelines for the Netherlands. The Dutch guidelines
recommend using Hoekstra's Dutch translation of the AQ as a case
identification instrument [5.2]. Apart from the paper and pencil version,
the Dutch AQ is now also included as a digital test application and even
though the digital application only started recently, it has been used 34
times by 22 different institutions over one month (July 2013) [5.3].
The international impact of Hoekstra's research is further evidenced
through her development, in collaboration with Ethiopian psychiatrists and
mental health experts, of mental health education materials for the HEAT
programme in Ethiopia [5.4]. A first cohort of 1,367 health extension
workers started studying these materials in 2010/2011, a further 20,000
students are expected to enrol in the programme. The first 204 students
graduated in 2012; Hoekstra and colleagues evaluated the mental health
study sessions of HEAT in this first cohort of graduated students, and
compared their knowledge, attitudes and skills with health workers who had
not yet received training. The first findings of the study with
HEAT-trained health workers showed less stigmatising attitudes and
incorrect beliefs regarding the causes and treatment of autism. Based on
the findings from this study, the research team produced additional
training materials comprising five videos showing how to conduct a
clinical interview with parents of a child with intellectual disability or
autism, and a mental health pocket guide with dedicated sections on child
mental health including autism and intellectual disability. The Ethiopian
Federal Ministry of Health has formally approved these study materials and
intends to distribute the pocket guide to all 39,000 health extension
workers in the country. All study sessions and training materials are free
and openly available online, with the potential for re-use in other
under-resourced countries. Hoekstra is included in the World Health
Organisation's global autism network. In 2013 she presented the first
project findings at an autism consultation organised by the World Health
Organisation and Autism Speaks [5.5].
Research advances made by Hoekstra informed her book, The Autism
Spectrum in the 21st Century: Exploring Psychology, Biology and Practice,
co-authored with Drs Ilona Roth, Chris Barson, Greg Pasco and Terry
Whatson [5.6]. The book is seen as `a must-have manual' of
`extraordinarily good value' [5.7]. Parents of children with autism have
commented on how helpful they have found the book: (i) `every parent
should be given this book upon receiving such a devastating diagnosis, as
although my son was diagnosed more than a year ago, and despite reading
much on the internet, I have learnt so much more from the book. ...' (ii)
`I find it [a] very good summary ... and [the book] actually helped me to
adjust the course of actions in ... helping my son.'
Hoekstra's research also features on The Open University's OpenLearn
website, for which she and colleagues Ilona Roth and Mark Hirst produced
the following materials:
Altogether, these autism-related educational pages have attracted over
62,000 unique visitors in the period between April 2011 and July 2013. The
`Unzip your genes' page has attracted more than 37,800 unique visitors
since April 2011; and more than 20,000 people have completed the Unzip
your genes quiz. The `Unzip your genes' page includes not only a quiz, but
also two animated videos explaining 'what is meant by genetic difference'
and 'what are twin studies'. The two animations have been viewed around
26,000 and 35,500 times between April 2011 and July 2013. The videos can
be found on the 'unzip your genes' page, direct links to the YouTube
videos are: http://www.youtube.com/watch?v=a5yzRRvROpE
Hoekstra frequently gives talks to a wider audience [5.8] and her research
and her comments on autism research findings are covered in the popular
Sources to corroborate the impact
- Organisation that can corroborate claim of impact: CASS18+ (Dutch
Psychiatry Consortium): http://www.cass18plus.nl/.
The Psychiatrist and CLASS 18+ board member can be contacted regarding
the claim that the Dutch translation of the AQ, validated by Hoekstra et
al., 2008, is the most commonly used instrument in clinical practice to
aid autism spectrum diagnoses in adults.
- Dutch multidisciplinary guidelines autism spectrum disorders in adults
[Multidisciplinaire richtlijn Autismespectrumstoornissen bij
volwassenen. Richtlijn voor de diagnostiek en behandeling van
autismespectrumstoornissen bij volwassenen.] Final concept guidelines
for authorisation, October 2012: www.ggzrichtlijnen.nl.
- Organisation that can corroborate claim of impact: TelePsy:
www.telepsy.nl. The Director, Telepsy can be contacted
regarding the digital application of the AQ and can confirm how
frequently it is used by clinical care institutions in the Netherlands.
- The Open University's Health Education and Training (HEAT) Programme:
- Consultation on ASD and other developmental disorders: From
Awareness Raising to Capacity Building, 16-18 September 2013,
World Health Organisation Headquarters, Geneva.
- Roth, I. with Barson, C., Hoekstra, R., Pasco, G. and Whatson, T.
(2010) The Autism Spectrum in the 21st Century: Exploring
Psychology, Biology and Practice, London, Jessica Kingsley
- Ratcliffe, book review of `The Autism Spectrum in the 21st Century:
Exploring Psychology, Biology and Practice', Learning Disability
Today, June/July 2012. p. 30.
- Selected talks by Dr Hoekstra:
Dutch Autism Society Conference, 7-8 October 2011 (http://www.autisme.nl;
audience around 1200 people); BPS London Lectures, December 2010 (http://www.bps.org.uk/news/london-
lectures; audience 800 people); National Autism Conference,
Rotterdam, 16 March 2012 (http://www.nationaalautismecongres.nl/;
audience 600 clinical and academic professionals) and its sister
conference in Frankfurt, 17 March 2012 (http://www.autismus-kongress.de/;
audience 200 clinical and academic professionals).
- Selected media coverage:
New Scientist (online and print edition) 20 August 2011:
Commentary on new autism family research [http://www.newscientist.com/article/mg21128264.000-autism-risk-rises-for-siblings-
of-autistic-children#.UpM0R9JSh8E]; New Scientist, 25 June
2011: Coverage of research findings [http://www.newscientist.com/article/dn20589-childhood-autism-spikes-in-geek-
heartlands]: Financial Times, 15 July 2011 [http://www.ft.com/cms/s/2/03cb43a0-acff-11e0-
9623-00144feabdc0.html#axzz2ju6OKHRS]: Dutch newspapers, 20-21
June 2011: `NRC Handelsblad', `Trouw', `AD', `de Telegraaf', `Metro',
`de Pers', `Eindhovens Dagblad'; 23 October 2010.