Photographs of Boris Johnson out hiking with his son hanging loosely from his ample frame caused the expected Twitter storm towards the end of August. Concern for the baby’s welfare was, for many, no more than a useful entry point for criticism of the father. However, for Wilf Johnson’s health and development, Boris’ skills with a papoose may prove less consequential than the Prime Minister’s age and that of Wilf’s mother, and the fact that Wilf is a little boy. These factors increase the odds significantly that Wilf may one day be diagnosed as autistic.
Boris, at the age of 55, and Carrie Symonds, aged 31, became parents to a baby boy at the end of April, apparently somewhat earlier than expected. Very few details were released to the public other than his name. The birth took place during the height of the first wave of Covid-19 in London, shortly after Boris contracted the disease and spent some time in an ICU bed. Most of us will not have wondered much about Wilf and his health until or since the family photos were released. However, I, like many parents of autistic children, wonder a lot about the development of the children of public figures. I wonder what it would be like if Wilf were autistic and the Prime Minister chose to address the challenges of raising an autistic child publicly. More than raising awareness, important as that would be, I wonder how the lives of countless families might be transformed if a PM understood autism and made its diagnosis and care a priority.
Prime Ministers have been highly protective of their children, and the public may have forgotten what they learned from David and Samantha Cameron about cerebral palsy (CP) and epilepsy or from Gordon and Sarah Brown about cystic fibrosis (CF). Both conditions are very serious and quite rare: CP affects between 2.3 and 3.6 children for every 1000 born, and CF around 1 in every 2000-3500 infants. Autism Spectrum Disorder (ASD), a neurodevelopmental condition, is far more prevalent. It affects up to 2% of children born today throughout the world and it presents a range of challenges to families. Boys are far more likely to be autistic than girls, and premature children are also at higher risk.
Besides the diagnostic criteria for ASD, which include (A) “persistent deficits in social communication and social interaction across multiple contexts”; and (B) “restricted, repetitive patterns of behaviour, interests, or activities”, autistic children manifest a series of co-occurring conditions. These include “Motor abnormalities (79%), gastrointestinal problems (up to 70%), epilepsy (up to 30%), intellectual disability (45%), and sleep disorders (50–80%)”.
A 2019 study of “Genetic Causes and Modifiers of Autism Spectrum Disorder” observes that “ASD is now understood to be a disease of complex interaction between genetics and the environment, with heritability estimates ranging from 40 to 80%”. As a condition with a genetic basis, there is a strong correlation between parental “risk factors” and prevalence of autism, although at this time causation remains unclear.
According to research published in the journal Molecular Psychiatry , the parents least likely to have an autistic child are in their twenties or thirties and relatively close in age. “In a population-based cohort study from five countries (Denmark, Israel, Norway, Sweden and Western Australia) comprising 5,766,794 children born 1985–2004 … the relative risk of ASD was estimated” to be far higher for fathers aged 50 and older, who produced 1.66 autistic children for ever one fathered by men in their twenties.
The highest risk is associated with increased age of both parents, especially where there is a significant age difference between mother and father. Boris is 24 years older than Carrie. Their pregnancy, therefore, presents a higher risk of producing a child with an ASD, although lower than if Carrie were also aged 40 or older. The risk remains small, no more than 2%. But the greatest increased risk for children born to older couples or those with greater age differences is not level 1 ASD, formerly known as Asperger’s, but of level 3 autism with associated intellectual disability.
Children with a level 3 diagnosis require early and regular interventions, typically including thousands of hours of speech and occupational therapy over many years. With a sufficient level of input begun below the age of two, some may advance to the level of “neurotypical” peers in achieving basic milestones. However, in the UK this will not be easily achieved. Most autistic children in the UK are flagged by schools, when by definition they are already too old for “early intervention” therapies.
Securing a diagnosis of ASD for a child under school age requires prompt action by alert, concerned parents. The “Modified Checklist for Austism in Toddlers” M-CHAT is an excellent online tool for parents concerned about a toddler’s development. For children under five, GPs act as gatekeepers. A good GP will trust parents who come armed with an M-CHAT and a list of concerns, and will observe the child closely. However, few GPs are expert in recognizing neurodevelopmental delays in very young children. If a referral to a consultant is made, the chance it will be rejected is very high. If an assessment is scheduled, it will take many months for the child to move up a waiting list. For most it will take longer than a year. If a diagnosis is secured, then the grueling process of identifying and securing services and therapies will start. Each day waiting is a day lost.
Screening and “early intervention” therapies for children aged two and three, although they are simple and cost effective, are almost unknown in the UK. They have become the norm in the USA, where the American Academy of Pediatrics recommends autism screening during routine doctor visits for toddlers aged 18 and 24 months. Effective autism screening is also undertaken in an increasing number of European countries and worldwide. The M-CHAT, a simple list of twenty questions, is among them and it has even been translated into Arabic for use by clinicians in Saudi Arabia. However, it is not used by GPs the UK, although the original CHAT was developed in Britain by Simon Baron Cohen.
The odds that Wilf Johnson will be “neurotypical” are very high indeed and are not affected by how tightly or loosely Boris straps him into a papoose. Of the 600,000-700,000 children born in the UK each year, around 10,000-12,000 will be autistic. Many will have had better odds than Wilf in the parental lottery. All should receive the earliest diagnosis and the best treatment possible.