The idea that early diagnosis and intensive intervention are critical for children with autism only makes parents more anxious, writes Michael Fitzpatrick
“Guilt-induced hyperactivity” is how one mother on an autism bulletin board describes her “obsessive research” and quest for treatments for her son. “Everything I was reading was saying that early intervention was crucial if he was to stand a chance of an independent life.”Similar themes recur in parental accounts. One mother writes of a “race against time”, another of desperately trying to pull her child through a “window of opportunity”.
These ideas are a potent source of guilt and blame. Parents blame themselves for their failure to spot the early features of developmental delay – or for what they later acknowledge as their denial of warning signs. They blame professionals for any delay in the process of assessment or confirmation of diagnosis. “We lost nine months,” declares one “still furious” grandfather in a recent interview.
Once alerted to the diagnosis, parents embark on the frenetic pursuit of interventions. Campaigning promoters of such interventions always insist on the benefits of starting early and proceeding intensively. They claim dramatic improvements – even recovery – if children follow various behavioural programmes, exclusion diets and a vast range of quack therapies.
Yet, while belief in early intervention has a powerful intuitive appeal, it lacks scientific backing. Professor Michael Rutter, Britain’s senior autism authority, told a recent conference that there was “no convincing evidence that benefits of psychological intervention are contingent on either very early or very intensive intervention”. There is even less evidence in favour of alternative treatments, at whatever age they are started.
Prejudices about the value of early intervention in autism are linked to the speculative theory that there is a critical period of brain growth up to the age of three, after which scope for further development is impossible. This notion is critically appraised by John Bruer in The Myth of the First Three Years, in which he reveals the lack of neuroscientific evidence for this theory and the sociological evidence against it.
Science is little help
As the American anthropologist and parent of an autistic daughter, Roy Richard Grinker, observes: “Science actually tells us little about how to raise or educate our children. But the selective appropriation of science by certain science writers and high-profile scientists tells us a lot about the continuing preoccupation with blaming mothers.”
There can be no doubt that once parents and frontline professionals such as health visitors or GPs have recognised delays in development or other warning signs in young children, long delays in the process of assessment and diagnosis are distressing for everybody. Programmes that provide support for parents in these difficult times and assist them in encouraging communication and in dealing with difficult behaviours around eating, sleeping and toileting can be very helpful.
But early intervention should be a matter of practical support for parents to reduce the distress that follows diagnosis, not a means of ratcheting up anxieties with warnings of the urgency of pursuing esoteric therapies. Extravagant claims for the effectiveness of early interventions intensify the rage and guilt of families affected by autism.
Michael Fitzpatrick is a GP in Hackney. His book Defeating Autism: A Damaging Delusion has just been published by Routledge
This article is published in the 21 May issue of Community Care magazine under the heading Guilt and blame are a mother’s lot when her child has autism