The autism blame game Parents often have good reason not to trust authorities

On 29 July 2024, a 17-year-old male named Axel Rudakubana walked into a Taylor Swift-themed dance workshop in Southport, killed three young girls and wounded many more. How could this happen? How could it have been stopped? Sir Adrian Fulford’s Southport Inquiry, published earlier this month, examines the lead-up to the events in an attempt to provide answers.

The Inquiry finds that there had been obvious signs of danger for several years prior to the attack. When he was 13, Rudakubana’s school had noted his unhealthy obsession with violence. He confided to Childline that he wanted to kill a schoolmate and that he had taken a knife into school for this purpose. Schools, Children’s Services, the Child and Adolescent Mental Health Service (CAMHS), Child and Youth Justice, the Police — all had fragments of information. But somehow, this never formed a complete picture. No one agency realized just how dangerous Rudakubana had become, and none, therefore, took the required action. Alongside more localized recommendations for individual agencies, Fulford finds a need for greater inter-agency cooperation and information sharing.

Alongside this, though, the Inquiry also places significant related blame at the door of Rudakubana’s parents, especially his father, for a “combative and unhelpful attitude”. The agencies’ failure to intervene more effectively, Fulford concludes, is partly down to how hard the parents made that job. The parents “sought to avoid, rather than engage with, the statutory services that were available to them”, and were “deliberately selective” which agencies they shared information with. They “refused to take legitimate professional concerns seriously”. They “wanted to try to control the narrative”, sometimes “trying to turn professionals against each other” for this purpose. The parents, Fulford argues, should have “trusted” the agencies, and empowered said agencies to control their son’s case.

It is at this point that Fulford’s narrative begins to seriously trouble me, as I’m sure it will many parents of autistic children. Rudakubana is autistic. And as a parent of (non-violent) autistic children myself, I have also (variously) either done, or been falsely recorded as doing, each of the above things that Fulford castigates the parents for, in one form or another. So too have thousands upon thousands of others. And we have had good reason. If Rudakubana’s parents didn’t see fit to “trust” the agencies — if they felt it was often better to selectively withhold information, if they drew on what some agencies had said to put pressure on the accounts of other agencies — well, in general terms, that all sounds exceptionally reasonable to me. We need to talk about trustworthiness.

So let’s back up a little. Autism is not especially rare; while it’s hard to estimate actual prevalence, it’s plausibly something like 5% of the population. What is it like to be a parent of an autistic child in England today?

Well, it’s a lot of things, several of which might cast interesting additional perspectives on the Fulford report. But I want to single out one in particular. While parenting an autistic child also has its more intrinsic challenges, for many of us, by far the most stressful aspects arise from interactions with schools and public services. Not only do many of these services fundamentally fail to understand autism — crucially, they also fail to acknowledge that they don’t understand autism. In particular, it is routine for public agencies to throw honesty, integrity, balance and ordinary epistemic standards completely out of the window when dealing with autistic children and their parents. The results for families are devastating.

The following scenario is pretty typical. (Honestly: the scenario itself is fictional, but I’ve constructed it largely from a collage of actual cases.) Meet Ben. Ben is an intelligent, articulate eight-year-old. He is also autistic, though perhaps not yet formally “diagnosed” as such. Things have mostly seemed fine for Ben so far, but in the last couple of months, the wheels have started to come off as regards school. Ben is increasingly reluctant to go. When his parents do manage to get him there, he clams up. It’s hard for his teachers to get him to enter the classroom.

What’s actually going on is that Ben, like so many other autistic children before and after him, finds the mainstream school environment overwhelming. For him, it’s a perfect storm of social complexity, unclear expectations, sensory overwhelm, unpredictability. The rough equivalent for a neurotypical child would be an environment in which they were poked all over at one-second intervals with needles, while blasted with loud music, while told to stand on one leg and correctly discriminate between jokes that are funny and those that are unfunny by someone else’s standards, on pain of ridicule. Now, at the same time — and with the other hand please — write a one-page news report from the point of view of a penguin visiting your school for a day. Detention if I don’t like what you write.

Ben simply can’t do it any more. The whole place terrifies and bewilders him. It feels dangerous. His mouth goes dry and he gets stabbing chest pains at the very thought of it. Ben desperately needs the adults around him to understand this.

This is not the way the school sees things, however. In their version of the story, Ben is being stubborn and disobedient, and making bad choices. He needs to learn that he can’t always just do what he feels like, and that ignoring instructions from adults is unacceptable. The solution is to be more strict with him; there need to be consequences for noncompliance. And since there’s clearly nothing wrong with the school, the cause of all this must be parenting deficiencies.

Slightly taken aback by the suggestion but knowing that they have nothing to hide, Ben’s parents accept that a social worker is to visit their home. But the social worker already knows, going in, what her answer must be. The home environment and the parenting style are picked apart. It doesn’t look like a neurotypical household! The social worker gives the parents the lists of changes they need to make, copy-pasted out of Parenting 101.

The next part of the story has two versions; choose your own adventure. In the first, the parents humbly agree that they have been doing it all wrong, and follow the social worker’s advice. Then Ben really loses it. It turns out that all those little adaptations to his individual needs that his parents had made at home over the years, by experimentation and parental intuition, had made the home his safe haven, his one fixed point in an otherwise bewildering world. In the second version, Ben’s parents are wise to this; they politely but assertively explain to the social worker what traditional parenting methods are often contraindicated for autistic children, and that what they are already doing works for their family. Bad move: the social worker adds to her file the especially damning fact that the parents are difficult, that they refuse to accept “professional” guidance. Never mind that the professionals in question are not autism professionals — or the fact that actual autism professionals would generally back up the parents’ account.

Either way, the social worker goes away with her notes. The parents are neglectful, the home life is chaotic and lacking in boundaries, and the parents are either unable or unwilling to implement the required improvements. Ben’s parents receive a letter from Children’s Services. “We have been informed that you are placing barriers in the way of your child’s education.” Statutory social service intervention in the family is now under consideration.

Ben himself, though unaware of the story developing behind the scenes, spirals further into crippling anxiety, as the school pursues exactly the wrong response to his neurotype. Ben’s parents are meanwhile steadily going out of their minds with worry, both about Ben’s immediate plight and about being referred to social services. His dad loses his job at his next review, no longer able to perform effectively while all this is occupying his headspace. This is the agencies’ “support” for Ben and his family.

Such anecdotes became loud and frequent enough that NHS England commissioned West Midlands ADASS, an association of social care professionals, to investigate. The result was a 2024 report: “Blamed instead of helped: How parents of autistic children experience parental blame when they approach services for support.” The investigation found that 86% of parents experienced “parent blame” after seeking support for their autistic child along roughly the lines of the above.

“Having been placed on Child Protection, I felt the immense injustice in this,” the report quotes one parent as saying; “[t]hey ripped apart every facet of my life in the CP reports. It was a manuscript of grotesque lies, misinterpretations, and invasions.” “Coping with the blame and having to defend ourselves from false accusations has led to a delay in our ability to get the right help,” writes another. “Discriminated against because Health [service] lied to cover up their own negligence which has been utterly horrific and traumatizing,” relates a third. Parents report the development of complex PTSD, nervous breakdown and relationship breakdown. Some families choose to withdraw their child from formal education, or to move overseas, to escape.

I found out about this because I am part of this 86%. A while back, I spent a few months liaising with my son’s school and local authority, in a quest for appropriate support for his education. While the lack of autism awareness was blatant, the “parent blame” in my own case was applied more subtly, primarily in agency documents that I was never meant to see. I happened to obtain these documents via Subject Access Request, some time later. Reading those documents (and re-reading them, as I really should stop doing) transports me into an alternative reality. “A manuscript of grotesque lies, misinterpretations and invasions” is a pretty accurate description. In addition to the list of alleged safeguarding concerns, I was surprised to read in the official records that, just like Rudakubana’s parents, I too have apparently refused to acknowledge or discuss numerous legitimate concerns from professionals — concerns whose existence, in my case, nobody ever mentioned to me. I was surprised to read that I too have denied relevant professionals appropriate access to support my child — access that they never asked for, for “support” that they never offered. I’m officially considered a “safeguarding” risk to my child; my family is now “known to social services”, and will be forevermore.

My first reaction to all this was shock and disbelief — then anger, disgust, irrational shame, a raging sense of injustice, everything mixed together. I haven’t slept properly for several months now, since receiving that SAR. The words keep going round in my head in the small hours. I’m hypervigilant now at the school drop-off, always wondering what crime I might be committing today that could tip us over the edge into a formal safeguarding referral. I’m wise now to how things can be distorted, once the school has decided on an uncharitable interpretation of a particular family. Somebody wiped their mouth on their sleeve? “Children’s clothes are routinely soiled.” One of my children runs ahead to join her friend? “Parents have been observed not to exercise adequate supervision for ensuring children’s safety.” A child has a meltdown on the way in? God forbid. I’m on anxiety medication now for the first time in my life. Still, looking at the stories in the West Midlands ADASS report, I guess I am one of the lucky ones.

Returning to the Southport Inquiry, all this raises two questions for me. First: while the Southport Inquiry did allow a voice to Rudakubana’s parents, it draws very heavily on agency accounts. Such agencies are known to have widespread practices of misinterpretation, distortion and outright lying in their narratives about parents of struggling autistic children. I am not in general a cynical person but I do wonder: how much credence, exactly, should we give to the Inquiry’s narrative about the parents?

But even if Fulford’s own conclusions about Rudakubana’s parents are fair and accurate as far as they go — the second, more important, thing is that there is a further question. Let us grant, at least for the sake of argument, that Rudakubana’s parents were somewhat (or very) uncooperative with agencies, that they sometimes sought to avoid agency involvement, that they were selective in information sharing, and so on. Let us also grant that these things contributed to the tragic events of 29 July 2024. The further question is: why did the parents behave in those ways, insofar as they did? And just how unreasonable were they to do so?

Well, I don’t know. But in light of the above, a rather obvious speculative answer does suggest itself. If Rudakubana’s parents started out fully trusting and cooperative, but withdrew much of that trust as a direct result of their agency interactions, they would be far from alone. In the West Midlands ADASS investigation, 73% of parents surveyed report doing the same thing; I myself have done the same thing.

Seeking to avoid the “services” that are available to me, and being deliberately selective about which ones to share information with? Absolutely; I’d have to be mad not to. I know now that I have to be careful in picking the services that understand neurodivergence and actually provide useful support, and to avoid the parent-blamers like the plague. A desire to reclaim some control over the narrative? If the official narrative says that my child is stubbornly choosing to miss out on his education as a result of lack of boundaries in the home, yes please, some opportunity to correct that narrative would be nice. Trying to turn professionals against one another? Well, if that means things like paying a psychologist to write a letter saying the same things that I’ve been trying to tell the school about what my child does and doesn’t need, then tick, I’ve done that. Do I trust the school, after all this, not to manipulate the information they record? You must be kidding.

Over the centuries, we have made enormous progress toward the ideal of having the right institutions in place for effective cooperation where it is needed, and ensuring the warranted trust that allows those institutions to be effective. But gaps remain, and we must recognize them. And where we find them, it is our responsibility, as a society, to fix them. Trust has to be earned. Support for autistic children is one such gap.

This is not to exonerate the parents in the Southport case. There are obviously differences between Rudakubana’s case and that of a non-violent child who merely struggles to access education. But if, as Sir Fulford concludes, the parents’ lack of trust in the agencies contributed to the tragedy of 29 July 2024, and if in addition, as I have speculated, the parents’ lack of trust might have been entirely warranted — well, it does bear some thought.

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