Parents of autistic children face blame when seeking support – report
Research by the Autism and Parental Blame Project found parents are frequently blamed, criticised and at risk of being subject to child protection proceedings when seeking support for their autistic child.
Blamed Instead of Helped is the name of the report that was created by the Autism and Parental Blame Project. It’s findings were published yesterday and it’s fair to say they can be described as nothing short of devastating.
Experts discovered that 86% of parents of children with autism face blame when seeking health and care support. What’s more, 72% of parents experienced open criticism of their parenting abilities.
Debbie Hollingsworth from West Midlands ADASS and one of the principal investigators on the project said: ‘The project was commissioned in response to complaints from parents about the experiences they had when they approached health, education, and social care professionals about their child’s difficulties. Our research reveals the extent of blame, rather than support, that parents experience from all three sectors.’
Some of the study’s other major findings include:
- 90% of parents said that their child did not get the right support due to them being blamed when asking for support
- One in four parents said they had become subject to a safeguarding referral after asking for help with their autistic child
- One in six parents had been accused of Fabricated and Induced Illness (FII)
- Parents who themselves are also autistic were three times more likely to be accused of FII and to have their child removed from their care than non-autistic parents
- 73% of parents said they had lost trust in services and professionals due to their experience
- One in five parents said their child was at increased risk of suicide as a result of the impact of parental blame
Bernadette’s story
Bernadette and her partner welcomed their first child in 2012, and by the age of two and a half, he was displaying very high levels of anxiety and hyperactivity. At his neurodevelopmental assessment pathway sessions, he presented as a ‘typical’ little boy, but at home he continued to demonstrate heightened levels of anxiety and increasingly severe signs of autism. He would not eat or sleep, was uncontrollably energetic and could be physically violent towards himself and others. He would pull out his own hair and eat it and bite his fingernails until they came off entirely. He had no sense of pain or danger.
Midway through the assessment process, Bernadette made a complaint about the paediatrician on the NHS team, after the family felt that he was being dismissive and offensive in appointments and was not acknowledging their son’s symptoms. Late into the assessment process, following her own research, Bernadette suggested to professionals that her son might be showing traits of a condition called Pathological Demand Avoidance (PDA).
Despite this, and without involving Bernadette in their discussions, the professionals concluded that her son was not autistic. They acknowledged he experienced some communication and sensory difficulties, as well as high anxiety. But the team blamed Bernadette and her partner for their son’s anxiety and accused them of exaggerating or making up his symptoms. The NHS team then referred Bernadette and her partner to the social services child protection team for Fabricated and Induced Illness, a form of child abuse.
While this process was taking its course, the family received confirmation from a private assessment that her son did indeed have autism and PDA. In the course of a few months, the child protection proceedings were dropped.
Bernadette said: ‘In 2015 I was accused of Fabricated and Induced Illness. My partner and I were blamed by the NHS team who were assessing my son for neurodevelopmental conditions. They said we were causing and exaggerating his challenges. In the child protection reports they ripped apart every facet of my life to validate their position. We were later proved innocent.
‘I got involved in this project to raise awareness of this hidden epidemic and help break the pattern of institutional blame against parents of autistic children. I hope professionals will begin to understand the impact that their words and accusations have on innocent families like mine.’
Next steps
Following their findings, the researchers have highlighted eight key considerations that require urgent attention from policymakers, public services and the general public.
These include:
- Autism is widely misunderstood by professionals as they fail to recognise the diversity and complexity of autism
- Accusations result in trauma and produce stress, anxiety and depression for parents
- Autistic parents may be at higher risk of being blamed as they face additional discrimination or misunderstandings when seeking help for their child
- There is a high level of mistrust from parents who lose faith in services and professionals
- There is a high risk of child protection proceedings as parents were frequently accused of neglect or harm
- Parental knowledge is undervalued, with their experience ignored or dismissed
- Blame is more likely before formal diagnosis of autism is given and there are significant difficulties and delays in obtaining a diagnosis
- Current support is often harmful, ineffective and does not engage with needs of either family or child, often causing more harm than good
The publication of this report’s findings was just the beginning. ADASS West Midlands – who also worked on the research as well as the University of Birmingham – have launched a new phase 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.
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