In this guest blog Karen Brown shares the results of her recent research in the behaviours of autistic children and the challenges to parents.  Brown says “I am very grateful and thankful to all the parents who took the time out of their already busy lives to complete my survey. A lot of parents passed my survey onto others, and many parents gave me encouragement, positive feedback, and took the time to personally contact me. I admire and respect their attitude and dedication to their amazing children. Thank you to my beautiful children Justin and Chloe, who have inspired me to learn all I can about ASD and gifted me with the experience of seeing the world through different eyes. Thank you to my supervisor Associate Professor Cyril Latimer, who answered my emails so promptly, gave advice, yet encouraged so much freedom, and supported me when I need it. “

 

The purpose of this study was to research what behaviours parents of children with ASD found the most challenging, difficult and stressful. Total response rate from parents was excellent with 417 responses at the time data analysis began. After controlling for missing or incomplete data, final number of participants for statistical analysis was 348. Of the 348 respondents, 219 requested a copy of the results.

There were 333 female parents and 15 male parents from multiple countries around the world: United Kingdom 71, Europe 9, United States 120, Asia 4, Australia 112, New Zealand 10, and Other 22. Information for the children was: 77 female, and 271 male, with 266 under the age of 12 years and 82 over the age of 12. Category of diagnosis was segmented into autism 129, Asperger’s 169, and PDD-NOS 50.

Investigations of child gender revealed no significant effects on parental stress, therefore indicating gender of child is not linked to higher or lower stress in parents. Diagnostic category of Autism, Asperger’s, or PDD-NOS was also found not be linked to parental stress, with no difference in parent stress found between the three categories.

Age was segmented into two group of over 12 years of age and under 12 years of age. Age was found to be linked to parental stress with parents of children under 12 years of age experiencing significantly higher levels of stress than parents of children in the older group.

Questions from the survey were segmented into four groups representing the categories of development, behaviour, future and stigma. All four categories were significantly related to parental stress. The most significant category related to parental stress was stigma, followed by behaviour.

The questions with the highest means for stigma were: “How your child is viewed by other children?”, “How your child is viewed by adults?”, and, “Your child displaying difficult or challenging behaviour?” Questions with the highest means for the category of behaviour were: Anger and outbursts, Child’s behaviour being the focus of attention, and, Screaming and yelling.

Highest rated questions for future were: Future outlook for your child for close social relationships, Future outlook for your child’s employment, and, Future outlook for child’s romantic relationships. Questions with the highest means for the category of Development were: Being included socially, Ability to make and retain friendships, and, Sensory difficulties.

It was clear that the main concerns parents had were in relation to the stigmatisation of their child, friendship development and the children’s acceptance by their peers. Challenging behaviours were strongly related to parental stress and the stigmatisation that parents felt when these behaviours were in public was also significant.

Feel free to use the comments box to ask any questions or comment on the results of Brown’s research.