Rachel Donaldson

University of Edinburgh _ Autism Research

This study was completed by Rachel Donaldson as part of an MSc Education and supervised by Dr Katie Cebula (School of Education, University of Edinburgh). Please note that this study was written up for a dissertation and is not, at this time, a peer-reviewed publication.

Study Aims

Broad Autism Phenotype (BAP) is the milder autism-like traits in individuals without a diagnosis of autism. The main aim of this study was to begin the process of involving parents of children with autism in BAP research. While there has been more and more research involving BAP, much of which has focused on parents, researchers have not yet asked parents directly about their views. This study attempted to do so via an online survey.

Main Findings

The survey was completed by 87 parents, with findings showing that:
• Parents were generally not very familiar with the concept of BAP
• Parents appear to have good self-awareness of their own BAP traits
• Parents tended to view any BAP traits as having a positive impact on themselves and their relationship with their autistic child
• BAP research was rated as very important but judged to be less important than autism research overall

While parents did not have much previous knowledge of BAP, they were generally supportive of research into this area. It is therefore important that researchers keep engaging with the autism community to make sure that parents are more aware of the research being done in this area and to avoid any misinformation. Also, by continuing to ask parents about their views and priorities this can help researchers set goals that can have real-life benefits. The positive impacts of having BAP traits reported by parents could help researchers to identify new areas of research. For example, exploring further whether similar BAP traits across family members helps to build family bonds and improve parents’ well-being. One challenge of BAP reported by parents was that BAP may lead to self-blame over their child’s diagnosis. It is important to highlight that the genetics of autism are complex and that other factors are involved.

Thank you again to those who gave their time to participate in this research. It is hoped that this study can provide a starting point for further engagement with parents and others in the autism community on this topic. If you would like to read more, please see the links below to further information on BAP and autism research.

Rachel Donaldson

Reports of Autism Research:

A Future Made Together: Shaping Autism Research in the UK: http://newsletters.ioe.ac.uk/A_Future_Made_Together_2013.pdf
One in a Hundred: putting families at the heart of autism research: https://www.autistica.org.uk/wp-content/uploads/2014/10/One-in-a-Hundred-Autisticas-Report.pdf

Blog Posts on BAP:

UK Organisations

The National Autistic Society: http://www.autism.org.uk/
Scottish Autism: http://www.scottishautism.org/
Parents Of Autistic Spectrum Disorder Adults: http://pasda.org.uk/
Sibs UK: http://www.sibs.org.uk/

University of Edinburgh _ Autism Research

We have been asked by, Rachel Donaldson , at Master’s Student at the University of Edinburgh to help her find parents of children on the autism spectrum to take part in a survey!

Donaldson writes “OkCupid, a popular dating site, as part of the many quizzes you can take to find your ‘match’, published a (flawed) version of the Broad Autism Phenotype Questionnaire. Broad autism phenotype is mild personality, language and behavioural ‘autism-like’ traits in individuals without a diagnosis of autism.

This led to Cynthia Kim (Musings of an Aspie) writing about the concept of broad autism phenotype on her popular blog about ‘Life on the Spectrum’. It is here that I first saw individuals on the autism spectrum and parents of individuals with autism discussing the concept of broad autism phenotype and how it impacted them. And such, a research project began.

Over the last 30 years there has been an increasing amount of research into broad autism phenotype which has mainly involved parents and siblings of individuals with autism and focused on similar areas to autism research. However, there has been little research into whether parents are generally aware of the concept of broad autism phenotype and how they feel about the idea; whether they feel it is an important area for research; and whether it impacts upon them and their relationship with their child(ren) with autism. This study aims to address these questions. If you are a parent of an individual with autism and are able to assist with this research please follow the link.

No previous knowledge of broad autism phenotype is required: https://edinburgh.onlinesurveys.ac.uk/parental-views-of-bap”

If you have any queries please put them in the comments section below. We will ask Ms Donaldson to reply.

Patient Talk

Patient Talk

Parents’ Views of Broad Autism Phenotype: Summary of Findings

Broad Autism Phenotype Questionnaire – A student at the University of Edinburgh is looking for parents of children on the autism spectrum to help her with some research!