We have been asked to help a student at Sheffield Hallam University find parents of children on the autism spectrum to take part in a short survey. Kerry Clark is studying for her Master’s degree in Developmental Psychology at the university and the research we feel is vital in getting a more holistic picture of families with members on the autistic spectrum and their hopes and fears for the future!
Ms Clark tell us that “the piece of research that I am carrying out is investigating how parents of children with Autism feel that they cope, and feel hopeful and optimistic about their own and their child’s future. This research will help to inform the support that parents receive for themselves and their child, following their child’s diagnosis. It is encouraged that both Mothers and Fathers complete the questionnaire separately, as we are really keen to represent fathers as much as mothers, as research conducted to date is often complete by mothers only.
Parents are asked to fill out four questionnaires relating to coping, hope; for their own and their child’s future, and share their optimistic views, taking no longer than 15-20 minutes.
My research is being supervised by a lecturer at Sheffield Hallam University, Rachel Taylor and has received ethical approval from Sheffield Hallam University’s ethics committee.”
A couple of weeks ago I was contacted by Autistica a UK based charity which raises money for Autism research. As some of you know I rode my bike from London to Brighton last year on their behalf.
They have developed a new fund-raising tool – a quiz called #MegaMinds.
Tonight the launch event in London. I’ve been asked to drop in and find out a bit more.
So tomorrow I’ll send over a bit more feedback but in the meantime I’m sharing with you the brochure for MegaMinds. You can have a look at their web site which gives a bit more information on Autistica and MegaMinds here.
We are a team of researchers from the University of Bolton with a keen interest in Autism Spectrum Disorder. We are contacting you as we need participants for our new study on the effects of ethnicity and socioeconomic status on the age at which a diagnosis of Autism is made.
Although a number of factors have been suggested to have an influence in the age at which a diagnosis of Autism is made, this information is not yet conclusive. For example, whereas some studies suggest that higher socioeconomic status has a positive impact on early diagnosis, others fail to replicate this finding, probably by not taking additional factors, such as ethnicity and educational level, into account.
The aim of this study is to provide a better understanding of how ethnicity and socioeconomic status may have a reciprocal influence and affect the age at which these conditions are diagnosed. This will allow developing more adequate screening strategies targeting specific ethnic and socioeconomic groups, thus permitting a more adequate intervention with children with Autism.
In order to do so we need the participation of parents of children/adolescents with a diagnosis of an Autism Spectrum Disorder. This entails completing a survey which asks questions regarding your daughter/son behavioural and cognitive preferences, as well as about your ethnicity and socioeconomic status. This should not take longer than 25 minutes.
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.
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.
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.
Please help Tina Boni , a student at Carlow University, with her survey into autism and parental stress.
Boni writes “My name is Tina Boni and I am a Doctoral Candidate at Carlow University in Pittsburgh, PA completing my dissertation research. My research examines Parental Stress, as related to parenting a child with an Autism Spectrum Disorder. As you probably well know, parenting a child with an autism diagnosis is an incredibly stressful job, and can significantly impact parental mental health, marriage, career, and the relationship between parent and child. This research seeks to better understand how specific individual child factors correlate with parental stress, in an effort to provide more practical insight into family-centered approaches to care.
I am seeking parents (or full-time caregivers) of male or female children, aged 6-18, who have been diagnosed with an Autism Spectrum Disorder of any functioning level to participate in this study. The survey takes approximately 20-30 minutes to complete, and there is a small incentive for participation. Please contact me directly with any questions you might have at firstname.lastname@example.org.
Please click on the link below if you wish to participate. Thank you!