RASE WS: Raising awareness for Education in Williams Syndrome and other neurodevelopmental disorders (with Dr. Olympia Palikara)


This study examines how the new SEND code of Practice 2014 has impacted on children's SEN support, especially the Education, Health, and Care plans.

We have collected questionnaire data from a large number of parents of children with Williams syndrome, Down syndrome and Autism Spectrum Disorders aged 4 to 25 years old as well as reviewed the EHCPs of some of the children to examine the quality of the EHCPs. We also collected data from professionals (including teachers, Special Educational Needs Coordinators (SENCo)s, speech and language therapists, educational psychologists, occupational psychologists etc.) who are working with chidlren with these neurodevelopmental disorders.

Outcomes of this study:

We are currently still analysing some of the data from this study. However, a number of outcomes have been realised:

The findings from this study have been used to inform the debate of the education select committee in June 2018. The evidence submitted for this debate can be found here.

Our results have shown that parents of children with Williams syndrome are less informed about the new SEND code of Practice compared to parents of children with Down syndrome and Autism Spectrum Disorders. Therefore, we have created a booklet with some guidelines which can be downloaded here:

EHCP guidelines for parents of children with WS

Publications from this study

1) Van Herwegen, J., Ashworth, A., & Palikara, O. (2018). Parental views on special educational needs provision: cross-syndrome comparisons in Williams Syndrome, Down Syndrome, and Autism Spectrum DisordersResearch in Developmental Disability, 80, 102-111.

2) Palikara, O., M. Ashworth & Van Herwegen, J. (2018). Educational outcomes of children with Williams syndrome: another neglected area of researchJournal of Autism and Developmental Disabilities.



As part of our research we are interested what kind of support children with Williams syndrome, Down syndrome and Autism need. This information will allow us to inform professionals and stakeholders such as the government, about the type of support that needs to be put into place for children with neurodevelopmental disorders. Currently, we are interested in how children, parents, and/or the families are affected in their daily lives by the child’s neurodevelopmental disorder. Therefore, we ask you to send us a personal message via twitter, Facebook or email (in order to reduce the risk of unintended disclosure) about how your child’s neurodevelopmental disorder has impacted on him/her or your family: and to send us an example from the past week. We would ask that you include your child’s age and diagnosis in your message but not their name.

Participation in this research is voluntary and you do not have to take part if you do not wish to. Your example will be treated as confidential and will remain anonymous at all times. We may publish your example in publications or in presentations to inform stakeholders. You are free to withdraw from the study at any time up until 30/09/2018, without giving any reason, without your legal rights being affected. Please contact Dr Van Herwegen, should you like to withdraw your child from the study. Should you wish to do so all data from your child will be destroyed immediately.


This research is being conducted by Dr. Jo Van Herwegen (Kingston University London) and Dr Olympia Palikara (University of Roehampton). If you have any questions feel free to email us at j.vanherwegen@kingston.ac.uk.


The research has received a favourable ethical opinion from the Research Ethics Committee of the Faculty of Arts and Human Sciences at Kingston University London (REF).


If you have any complaints about the study or how it is handled please speak to the researcher (J.vanherwegen@kingston.ac.uk) in the first instance. Kingston University has a complaints procedure. Please send any complaints to the Dean of the new Faculty of Business and Social Sciences, Professor Jill Schofield using email address ku662168@kingston.ac.uk.