A 成人B站 lecturer has penned an open and honest research article documenting her family鈥檚 battle to get an autism diagnosis for her child and how her parenting was continuously called into question.
Dr Barbara Mitra hopes the article, which has already been downloaded almost 500 times and shared among professionals in children’s services, will raise awareness about the need for better training among teachers and social workers.
The article, published in Ought: The Journal of Autistic Culture, is titled ‘It’s not Autism. It’s your Parenting’ and draws on her own diaries, records and journals she kept while trying to understand the cause of her child’s disruptive behaviour. She catalogues how hers and her husband’s parenting was continually questioned and considered to be ineffective, and how she had to battle for a correct diagnosis.
“Sadly, this is all too common an experience for parents with an autistic child,” she says. “It seems the first instinct is for professionals to blame the parents for their child’s behaviour rather than trying to help us to understand the root cause and together find effective techniques to manage it.”
Dr Mitra, a Senior Lecturer in Media and Culture, at the University, said on one occasion she had been asked by her child’s headteacher whether she had drunk alcohol when pregnant.
“I was just staggered,” she said. “I had been extremely cautious about what I ate and drank with both of my pregnancies. Additionally, I had been a parent who had regularly attended parent/teacher meetings. I was always present, engaged, and clearly health conscious. There was no obvious reason as to why I should be asked about whether I had drunk alcohol.
“This was the first of numerous accusations about us as parents and this kind of interaction set the tone for interactions with other organisations where parental blame seemed to be the first concern of those we met.”
Dr Mitra said she hoped her autoethnographic (using the researcher’s personal experience as a source of data) article would help to inform future training of professionals in both health and education settings and would open a dialogue for others facing similar situations.
“The extra stress and trauma of such continual questioning had a huge impact on us as parents and did nothing to help us deal with our child’s with worsening behaviour,” she said. “It seems that professionals continually questioned parenting styles, rather than focusing on the link between autism and behaviour, nor did they seem to understand the extreme stress and anxiety that parents and the autistic child themselves face. It was only when we started using strategies for Pathological Demand Avoidance (PDA) that our child’s behaviour improved, despite the casual remarks by the community paediatrician and other professionals that ‘it’s not PDA, it’s ineffectual parenting.’”
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