The Autism and Parental Blame research project seeks to understand how parents of autistic children experience parental blame when they approach health, education, and care services for support.
The project is led by West Midlands ADASS in collaboration with the University of Birmingham, and has been commissioned by NHS England (Midlands Region).
We have been working together with families to identify common concerns and themes and make recommendations for changes to practice that will ensure families feel heard and understood when they look for help.
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Outputs
- Systematic review of literature
- Interim report on survey of parents
- Focus group with parents
- Final report: Blamed Instead of Helped
The report Autism and Parental Blame: Blamed Instead of Helped, is intended for professionals, policymakers, researchers, and anyone who is interested in improving the lives of autistic children, young people, and their families
It presents key findings from all three phases of the project and sets out eight areas that we believe are worthy of further consideration. These are:
- 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autism and lack access to the knowledge to recognise and support autistic children and their families, often relying on outdated stereotypes. 86% of parents told us they experienced parental blame prior to an autism diagnosis.
- Accusations of blame result in trauma, long term damage and increased risk of suicide 1 in 4 parents completing the survey said their child was at increased risk of suicide as a result of the impact of parental blame, and 94% of parents experienced stress and anxiety.
- 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. Survey participants with a formal diagnosis of autism were three times more likely to be accused of FII than non-autistic parents participating.
- Parents of autistic children have a high level of mistrust in services and professionals. 73% of parents told us poor experiences had caused them to lose faith in services and professionals. Over a third of parents told us they experienced parental blame after making a complaint about a service or professional.
- 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 and 1 in 6 parents completing the survey reported being accused of Fabricated and Induced Illness with devastating effects on the entire family.
- Parental knowledge is not recognised or valued, with their experience ignored or dismissed and their motives questioned by professionals. 81% of parents who had experienced parental blame said they weren’t believed about their child autistic presentation.
- Parental blame is more likely before a child is diagnosed as autistic, there are significant difficulties and delays in obtaining an autism diagnosis, blame from health professionals reduced by 48% following a child being diagnosed autistic.
- Current support offered to parents is often unhelpful and sometimes reported as doing more harm than good, 65% of parents reported they were not offered support whilst waiting for an autism diagnostic assessment, and when support was offered, there were mixed views on how helpful this was. Less than 2% of participants said they get the help they need from services. The most frequent words used by parents to describe support following an autism diagnosis was “non-existent”.
What’s happening next?
ADASS West Midlands has launched a further phase of this research to investigate the perspective of professionals working with autistic children and their parents in order to explore the systems, practices and challenges which may underpin the issue of parental blame by professionals.
From early 2025, a second phase of this project will deliver a series of webinars for professionals in education, health and social care. A webinar will also be offered to parents to present the findings.
If you would like to be kept updated, please register interest at APB@wm-adass.org.uk