"Blamed Instead of Helped" - Uncovering How Parents of Autistic Children Experience Parental Blame

A Ground-Breaking Study Sheds Light on a Pervasive Problem and Provides Recommendations for Change

The "Autism and Parental Blame Project" is an important collaborative research initiative that investigated the experiences of parents of autistic children who have faced blame, criticism and judgement from professionals and society when seeking help and support for their child's needs. The project was commissioned by NHS England (Midlands) and involved West Midlands ADASS, the University of Birmingham, and parents of autistic children.

The research is ground-breaking in its scope, involving a systematic literature review, survey of 685 parents, and two focus groups. The findings reveal the widespread and detrimental impact of parental blame across education, health and social care services. Parents describe their knowledge being dismissed, facing accusations of fabricating their child's difficulties, and fearing their parenting is under scrutiny when they ask for help.

This article will summarise the key findings and recommendations from the full report, with the aim of raising awareness of this critical issue and calling for changes in policy, practice and societal attitudes to better support autistic children and their families. The perspectives and experiences of parents are placed front and centre.

Despite increasing awareness, the study found autism is still frequently misunderstood by professionals who interact with autistic children and their families. The vast majority of parents surveyed experienced blame prior to their child's autism diagnosis, with professionals often attributing concerning behaviours to poor parenting rather than considering an underlying condition. Parents described feeling judged and dismissed when raising concerns, especially if their child presented differently at home compared to school or healthcare settings. This was seen as evidence that professionals lack understanding of how autistic children may mask or suppress their difficulties in public. As one survey respondent shared: "A greater understanding of autism, particularly demand avoidance, among school staff would have made a huge difference to my child, and our parental experience."

The impact of facing blame and defending against accusations was described as "traumatic" by parents, with some developing PTSD-like symptoms. A significant proportion said their child's mental health worsened as a result, with a quarter reporting their child became suicidal. Nearly all parents experienced increased stress and anxiety themselves, with many feeling more isolated and fearing their child being removed from their care. Family relationships and careers also suffered. Parents wrongly accused of fabricating their child's illness or subjected to child protection investigations were especially vulnerable to lasting trauma. One parent powerfully articulated the toll: "Coping with the blame and having to defend ourselves from false accusations has led to a delay in our ability to get our daughter the right help, find the right school and generally created more work. Our daughter has missed over a year of schooling, my partner and I have struggled with our own mental health, siblings are also receiving support for their mental health. The last year and a half, since our daughter started senior school has been a living hell."

A striking finding was that a third of parents surveyed identified as autistic themselves, far higher than the prevalence in the general adult population. Autistic parents appear significantly more likely to face child protection involvement, with those formally diagnosed experiencing safeguarding procedures at a much higher rate compared to non-autistic parents. Autistic parents were also more likely to be accused of fabricating their child's illness. Focus group participants described feeling professionals lacked skills for working with autistic adults and made little effort to adapt their approach. One shared: "Normative parenting doesn't work for autistic parents and children. I'm meeting his needs but being judged by that."

Parents' trust in services has been eroded by experiences of feeling blamed and let down when seeking help. A large majority said they had lost faith in professionals. Some described complaints processes as ineffective, with no accountability for those who made false accusations, even when these were disproven. Many characterised trying to access support as a "fight" and felt the power imbalance favours professionals' perspectives. Notably, research shows some practitioners are aware they engage in parental blame. As one parent asserted: "All parents require an independent advocate who aren't employed by schools or local authorities. There is no true accountability."

Among the parents surveyed, an alarming number had been subject to safeguarding procedures, meaning a significant proportion were viewed with suspicion by services. A concerning percentage of those who experienced blame were accused of fabricating their child's illness, despite this being very rare in the wider population. The literature review highlighted some assessments of disabled children appear driven by a child protection lens rather than a focus on identifying needs and providing support. One parent recounted a distressing incident: "I was accused of hurting my child, which was not true. I was told my child could be removed from my care. I was told I face prosecution for child abuse, all because my nonverbal child had marks on his back which he could not explain and neither could I, photos and paperwork were submitted. I did not see the said remarks but as it turned out they were from the zipper on his onesie that he had slept in." The extremely high rates of investigations and allegations against this group of parents demands urgent examination.

Parents' expertise is often devalued and treated with suspicion. A large majority of parents said professionals did not believe them about their child's autistic traits. Their in-depth knowledge of their child was frequently dismissed, with practitioners positioning themselves as the experts. Many parents described intensively researching their child's condition in order to advocate for them. However, being well-informed was sometimes used as evidence against them, with accusations that they were over-emphasising difficulties to get their child labelled. One parent expressed their shock at this: "Despite being a professional I was shocked how my opinion no longer counted as I was now a parent. Despite having 27-year autism experience in a professional capacity and having been involved in delivering and developing training etc to professionals. They failed to recognise my knowledge and skills."

On average, parents experienced reduced blame from professionals after their child was formally diagnosed as autistic. However, for a significant minority, blame from schools increased post-diagnosis. Many saw no change in how social care treated them. While not the primary problem, parents were sympathetic to the impact of long wait times for autism assessments. The lack of support during this period caused major challenges. Negative encounters during the diagnostic process itself were also common, with gatekeeping and parents not feeling heard. One parent credited a proactive GP as the turning point in accessing help: "The GP was the first person to believe my child might be autistic. He was sympathetic to my near-suicidal child, and immediately sent off letters requesting help and input to different agencies. Without his help nothing would have happened towards investigating whether my child was autistic and what was causing their poor mental health."

Almost two-thirds of parents were offered no support while their child awaited autism assessment. Those pointed to parenting courses frequently found the strategies inappropriate for their child's needs, sometimes damaging the parent-child relationship. After diagnosis, the most common description of available help was "non-existent". However, parents praised support from third-sector autism organisations and peer groups. Positive experiences with neurodivergent professionals who "get it" were lifechanging, but largely due to chance. One parent shared the harm caused by ill-suited recommendations: "Attending parenting classes – told to go before referrals could progress – used harmful strategies that broke the bond I had with my son. [He has] trauma from these approaches."

The report provides several recommendations drawn from parents' suggestions. These include providing professionals with comprehensive training on autism, developing policies to investigate unsubstantiated allegations against parents and hold practitioners accountable for misconduct, ensuring assessors have robust autism knowledge, promoting a culture of parental partnership, expanding access to specialist support and peer networks, leveraging the skills of neurodivergent professionals, and conducting further research into the drivers of parental blame and its disproportionate impact on autistic parents.

The Autism and Parental Blame Project has shone a vital light on a pervasive and harmful issue affecting many thousands of autistic children and their families. By centring parent voices, it reveals the deep and lasting trauma caused when those seeking help are met with judgement, disbelief and investigation. There is now a robust foundation of evidence to spur change at individual, organisational and societal levels.

Professionals and services must reflect on how ingrained but erroneous assumptions may lead them to view parents with suspicion and undermine opportunities for support. Policymakers can shape expectations and accountability to ensure concerns are heard and expertise valued, while training can equip practitioners with the skills to recognise and meet neurodiverse needs. The disproportionate impact on autistic parents and the extremely high rates of child protection involvement demand particular scrutiny.

Ultimately, there must be a wholesale shift from cultures of blame to partnering with parents and respecting their insight and devotion as integral to helping autistic children thrive. As one focus group powerfully articulated: "Listen to the voices of autistic people - they are the experts in the room."

It should not take facing accusations of harm or years of battle to obtain support. By implementing the report's recommendations and continuing to elevate family voices, there is potential to create a society where autistic children's differences are understood and embraced, and parents are treated with empathy, believed and given the tools to help their children flourish.

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William Gomes, a British-Bangladeshi anti-racism campaigner, advocate for the rights of displaced people, and a contributor to various publications. He can be reached at [email protected]. Follow him on Facebook at https://www.facebook.com/williamnicholasgomes and on X at https://x.com/Wnicholasgomes.