This week the results of a leading autism and parental blame research project had its first introduction at the Worcestershire Autism Partnership Board. WPCF ensured Worcestershire parent carers were there to share their local experiences of parental blame.
The ‘Blamed instead of Helped’ project was commissioned by NHS England and led by West Midlands ADASS in collaboration with the University of Birmingham. The team sought to understand how parents of autistic children experience parental blame when they approach health, education, and care services for support.
The ‘Blamed instead of Helped’ lived experience advisory group was made up of parent carers from across the UK, but included a Worcestershire parent carer who has been advocating for local acknowledgement and systemic change since 2017. This parent carer also happens to be the Co-Chair of the Worcestershire Parent Carer Forum.
Worcestershire Parent Carer Forum arranged for two Worcestershire parent carers who have firsthand experience of parental blame to attend the Autism Partnership Board and share their families’ experiences. Senior representatives from across Worcestershire’s education, health and social care organisations were in attendance and heard our members’ raw and honest experiences.
Our first parent spoke of years of education professionals blaming her children’s unmet needs on her anxiety, and gaslighting her suspicions her sons were in fact autistic. Despite repeated suicide attempts and no evidence that they were a result of poor parenting, her son’s needs continued to be ignored and her parenting blamed. She eloquently made the point that, despite her own professional experience as a social work manager, she couldn’t convince people to consider that her son’s needs could be the result of something other than parenting, so what chance was there for parents without the same professional skills to lean on? Will the professionals involved in their children’s lives assume parental blame or be open to a variety of explanations?
Our second parent experienced accusations of Fabricated or induced illness (Fii) due to her child’s “perplexing presentations.” These allegations were later dropped without explanation or apology. She described the life-changing consequences of professionals’ unjust decision-making and the total absence of any accountability. She spoke with intense passion and called for urgent and immediate action.
The ‘Blamed instead of Helped’ project concluded with 8 findings, many of which resonated with the experiences our parent carers shared and with the wider feedback WPCF receives from Worcestershire SEND families:
- Autism is widely misunderstood by professionals as they fail to recognise the diversity and complexity of autism and lack access to the knowledge to recognise and support autistic children and their families, often relying on outdated stereotypes
- Accusations of blame result in trauma, long term damage and increased risk of suicide
- Autistic parents may be at higher risk of parental blame as they face additional discrimination when seeking help for their child. They may be misunderstood or misjudged by professionals who do not understand autistic presentation and communication styles.
- Parents of autistic children have a high level of mistrust in services and professionals.
- Parents of autistic children may be at higher risk of child protection proceedings as parents were frequently accused of neglect or harm, facing serious consequences such as child protection investigations.
- Parental knowledge is not recognised or valued, with their experience ignored or dismissed and their motives questioned by professionals.
- Parental blame is more likely before a child is diagnosed as autistic.
- Current support offered to parents is often unhelpful and sometimes reported as doing more harm than good.
The voices of Worcestershire parent carers who have been subjected to parental blame were heard loudly and clearly by the board. The impact of their stories was very evident on all attendees’ faces. The next steps were discussed, but for WPCF these included:
- The Head Of Service Adult Neurodiversity Team asking our first parent carer speaker to co-deliver a parental blame training session for Worcestershire social workers.
- WPCF will approach WCC Inclusion Services managers to discuss co-delivering free autism and parental blame workshops for education professionals.
- Challenging pre-conceived ideas around autism and language choices in professional reports.
The next phases of the ‘Blamed instead of Helped’ project will include webinars for parents and professionals, as well as gathering evidence from professionals’ perspectives. This extended research will return to the Worcestershire Autism Partnership Board for further consideration and reps from WPCF will be there to ensure that Worcestershire parent carer experiences are heard loud and clear.
