Kate E. Reynolds

  • 1 in 50?

    I recently read that the Centers for Disease Control and Prevention (CDC) has issued another estimate for children in the US, who it is believed have an autism spectrum disorder. In 2012, the figure was approximately 1 in 88 children, which has been upgraded to 1 in 50 kids according to the CDC’s latest findings.

    These statistics certainly would be testament to what many commentators are terming an ‘epidemic’ of autism, not only in the States but globally. There are, however several factors which should be considered in the clamour to label ASDs as a pandemic:

    1. The definition of autism spectrum disorders (ASDs) has broadened significantly since its description by Kanner in the 1940s. His work was based on a few cases of extreme end autism affecting boys and identified a syndrome involving repetitive behaviours and extensive lack of communication with the wider world.

    2. Rimland’s research in the 1950s identified that autism was a neurological condition, not a result of poor parenting skills and placed it under the auspices of medicine.

    3. In the last 20-30 years has research has focused on autism as a spectrum and extended the medical and educational understanding of autism to embrace higher functioning autism and Asperger Syndrome, in which intelligence and language skills are not ultimately affected, although there is delay initially with higher functioning autism, which is overcome as the child develops. The opposite end of the spectrum involves children whose social communication and awareness, learning abilities and motor skills may be profoundly affected. Most children probably are somewhere between these two extremes.

    4. Research has found examined specific social/educational/medical interventions which have produced tangible results in terms of lessening autistic behaviours and facilitating individuals’ social abilities. This, I turn, breeds expectations that our children will be better enabled to live in the social world.

    5. Western societies have developed an awareness of disability which has created a movement towards expecting our less able citizens to be housed in community settings, rather than residential hospitals or homes. In the UK, this movement was begun in the 1990s. This enhance society’s awareness of disability.

    6. Medicine has advanced to a point where new factors have been introduced, that affect the incidence of autism.

    Children like my son were around when I was young. In my class, Jude would have been labelled ‘simple’ and left to play alone, if he were allowed in a mainstream school at all. The expectation would have been that he should be in a residential home. Even in 2005 when he was diagnosed, the medical consultant told me my son ‘would be in residential care within a year’. Jude was just 3 years old at the time. This demonstrates how entrenched that thinking was and still can be in the 21st century.

    Research and better awareness in the general population mean that many more children are being identified as having autism spectrum disorders. This includes those at the less extreme end who may have been seen as eccentric in years gone by. As studies continue, we are more able to locate the different ways in which females present with autism, especially those with higher functioning autism or Asperger syndrome. Adults who may have a history of unexplained social difficulties may eventually be medically diagnosed as having autism when their experiences are assessed against current knowledge. Again, this will increase the official statistics.

    Expectations have been raised that interventions can, at the very least, lessen autistic behaviours and educate society to accept difference in the ways people think and see the world. Expectations breed demand for diagnosis and early interventions, which have been shown to optimise the life chances of individuals.

    As the CDC points out though, ‘a true increase in the number of people with ASD cannot be ruled out.’ So what factors may have altered to effect any ‘real’ change?

    1. Medical advances have increased the likelihood that preterm infants and those with genetic or chromosomal conditions will survive. Research shows that preterm children have an increased risk of ASD. In addition, many genetic and chromosomal disorders have an element of autism because a profoundly affected child may lack social communication skills, understanding of the social world and ability to engage in any level of social interaction. These factors all increase the figures for autism.

    2. Medical advances also mean that people can become parents at a much older age than previous generations. Research demonstrates that older parenthood of either gender, increases the risk of autism in the offspring.

    3. In Western cultures both genders are delaying parenthood, often due to careers. Divorce resulting in having a ‘second’ family, later in life, also increase the likelihood of older parenting.

    4. Maternal environmental factors, for example the increased incidence of medical conditions such as diabetes and epilepsy may increase the likelihood of ASDs. This is likely to be greater still in countries where maternity care is lacking, so mothers with underlying conditions are not closely monitored.

    5. If autism is mitochondrial in origin, certain vaccines may be linked to autism in those individuals, according to reports. However, I would stress that there is no evidence that the MMR vaccines or other immunisations cause ASDs in anyone who does not have mitochondrial dysfunction, which affects only 5% of autistic children and 0.01% of the general population.

    6. Broader environmental factors due to changing society may increase autism in children, according to some reports. These may include exposure to chemicals or compounds, such as lead.

    Even the CDC has hung a question mark over its own statistics, stating that the pieces of research which uncovered the two figures of 1 in 88 and 1 in 50 children, were focusing on different issues and used different approaches. The findings of each study cannot be compared in any simplistic way.

    So the official figures. Let’s hope the impetus is to plan services and support families, rather than cause panic that autism is epidemic.

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Kate E Reynolds - blogging

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