Invisible disability: Building Great Britons

A report was published on Wednesday by the All Party Parliamentary Group (APPG) for Conception to Age 2 – the First 1001 days. It’s called Building Great Britons.
The thrust of the report is similar to Early Intervention: Good Parents, Great Kids, Better Citizens (2008) and Early Intervention: The Next Steps (2011) from MPs Graham Allen and Iain Duncan Smith. Building Great Britons sets out a policy framework aimed at preventing the social problems believed to originate in adverse experiences between conception and a child’s second birthday.

Breaking the cycle

The conceptual model underpinning the report is a familiar one. Neglect, maltreatment and insecure relationships in early childhood are assumed to be a primary cause of mental health problems and antisocial and criminal behaviour. Parents who had such experiences during childhood tend to adopt the same child-rearing strategies as their parents, setting up a damaging (and costly) self-perpetuating intergenerational cycle.

Like the Early Intervention reports, Building Great Britons argues that preventing child neglect, maltreatment and insecure attachment will save money and result in a flourishing society due to the emergence of well-rounded citizens who are “physically and mentally healthy, well educated, empathic, prosocial, hardworking and contributing to the costs of society” (p.3). As Tim Loughton, Co-Chair of the APPG says “the economic value of breaking these cycles will be enormous” (p.4).

“This” it’s claimed, “is not ‘rocket science.’ Technically it is ‘neuro-science’” (p.3).
The basis for that claim seems to reside in repeated references to brain development, although there’s no detail about how brain development is involved. The association between early adverse experiences and long-term unwanted outcomes is well established, but there are some problems with the model.

what causes what?
The first is that just because two things are correlated, it’s not safe to assume that one causes the other. They might both be caused by something else, or be totally unrelated. So parents might neglect, maltreat or form poor attachments with their children because their parents did, or because the family has a genetic predisposition towards severe post-natal depression, or because they are grappling with challenging life circumstances.

multiple causes
The second problem is that even if we could predict with certainty that all neglected, maltreated, chaotically attached children will develop mental health problems or anti-social behaviour in later life, the causal chain doesn’t always hold in the opposite direction because mental health problems and anti-social behaviour have other causes such as poor physical health, adverse life events or peer pressure.

looking back vs looking forward
A third problem is that retrospective surveys linking adverse childhood experience with later health and social problems, such as the ACE study referred to in Building Great Britons (p.14), tend to rely on self-reports – not always the most reliable sources of information, especially about early life. Prospective assessments that track children through their life course such as the Dunedin and Cambridge studies tend to be more reliable. They have also found correlations between adverse childhood experiences and problems in later life but that the emerging patterns are quite complex.

When reading through the research findings, I was struck by how often researchers expressed surprise at the frequency of adverse childhood experiences. The ACE study was prompted by the unexpectedly high incidence of sexual abuse in childhood reported by people dropping out of a weight loss programme. The Dunedin study began as a small-scale follow-up assessment of perinatal risk. Its scope was broadened after researchers found a higher incidence than they expected of accidental injury and impairments to sensory function, development and behaviour in 4/5 year olds. The implication wasn’t that the children had been neglected or maltreated (although some might have been), but that developmental impairments in the general population were more frequent than had been previously thought.

children with disabilities: noticeable by their absence

This brings me to a glaring omission in Building Great Britons. One group of children is especially susceptible to social, emotional and behavioural problems and is at increased risk of poor physical and mental health in later life. They are children with disabilities. But the only mention of disability that I could find in Building Great Britons was of children with Foetal Alcohol Syndrome, caused by a mother’s excessive alcohol intake during pregnancy.

Childhood disabilities can be caused by neglect or maltreatment but they can also be caused by factors such as;

• inherited genetic conditions
• spontaneous genetic variations at or before conception
• mother’s illness during pregnancy
• environmental damage during gestation (e.g. exposure to toxins)
• childhood infections
• accidental injury.

Whether you think disability is caused by a ‘functional impairment’ or by the way society responds to that functional impairment, for administrative and legal purposes a clear-cut distinction is usually made between someone who’s deemed disabled and someone who isn’t. But from a biological perspective the boundary is rather blurred. As the Dunedin study found, a significant proportion of children has some sort of developmental impairment; currently in the USA it’s 15%. In the UK, only 6% of children are classified as disabled, but that figure rises with age. Around 16% of the working-age population has a disability.

Not all disabilities are obvious, and some are difficult to detect. The average age at which autism is diagnosed, for example, is 5.5 years, and diagnosis is often much later than that. Autistic children have unusual attachment patterns and autism is so frequently confused with attachment disorder that Heather Moran, a consultant clinical psychologist, devised the Coventry Grid to help professionals distinguish between them.

There’s little doubt that neglect, maltreatment or poor attachment in childhood can, and does, lead to social, emotional and behavioural problems and to impaired physical and mental health. But what Building Great Britons does is to frame the causes of those problems solely in terms of neglect, maltreatment or poor attachment, and more specifically in terms of the ‘troubled families’ who are deemed to be the source of these societal ills (pp.3-4).

When I was delving into the thinking behind the Early Intervention reports, I asked a few researchers who’d been actively involved how some obviously erroneous claims about brain function had crept in. None had had a say in the final content of the reports, but one told me that it was sometimes necessary to present data in a way that was most likely to persuade government to come up with funding. I take his point; but I couldn’t see how that justified presenting the data in a way that was misleading.

What the data on social, emotional, behavioural, physical and mental health problems tell us is that children by definition are vulnerable, and parenting by definition is challenging. They also tell us that we are all, at all times, at risk from unforseen life events that could trigger social, emotional, behavioural, physical or mental health problems that result in us needing help from the community. That’s why in the developed world we have education, health and social care services.

It’s true that a minority of families cause a disproportionate number of problems, for themselves and others. There are good reasons why early intervention is appropriate for them. But because all children are vulnerable and all parenting is challenging, there are good reasons why early intervention should be available to all families. We shouldn’t have to justify it in terms of ‘good citizenship’ or the financial costs for ‘society’ – which at one time we were told didn’t exist.

Nor should reports produced by Members of Parliament about vulnerable children and challenged parents look right past one of the most vulnerable groups of children and one of the most challenged groups of parents. In the total of 351 pages that make up the two Early Intervention reports and Building Great Britons, childhood disability is mentioned, in passing, only five times – and three of those references are to Foetal Alcohol Syndrome.

When I contacted @first1001days, the Twitter account for to point out the omission, I got a prompt response inviting me to write some supplementary material. Within an hour, another parent and I had responded with a paragraph summarising the main issues, and notified @first1001days. I wasn’t surprised not to get an immediate reply, as the report was being launched that morning. But we’re still waiting…

Disabled people are still invisible, it seems.


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