Kate E. Reynolds

  • A Little More on Autism in China...

    The other day I was shambling around the internet when I fell upon the Autism Children Foundation based in Hong Kong, but covering mainland China. In its opening statements about what autism is and possible treatments, I found the following advice for parents of autistic children not to:

    1. Lay the blame on either father or mother’s gene

    2. Blame it’s caused by problems in pregnancy or delivery

    3. Blame the cause on poor parental or teaching method

    4. Hide your children to outsiders

    5. Feel shameful to admit your children are autistic

    6. Deny and delay treatments

    7. Give up hope

    These points may seem slightly odd to western readers, so it’s worth examining them.

    The first point is one I made in an article I wrote for a UK audience and one that was soundly repudiated by the reviewer, who claimed never to have come across this behaviour. In my experience, the genetic aspect of autism is either denied by parents or they are tacitly or explicitly looking to blame the other for having whatever genes are responsible. And make no mistake; all evidence points to a genetic component to all autism spectrum disorders, these being attributed to both parents (Baron-Cohen 2012). However, genes alone cannot explain autism and the research continues as to which other factors are involved in the development of the condition.

    One major likely factor involved is the environment during pregnancy, labour or at birth. There is evidence that infections, mother’s immune dysfunction, long labours and anoxia (lack of oxygen) all contribute to autism in the infant. Additionally, some dietary factors, such as lack of folic acid, are thought to play a part. Older parenthood of both parents is believed to increase the likelihood of ASDs because the female’s eggs and the male’s sperm are poorer quality and more susceptible to errors which can cause autism or other neurological dysfunction.

    Until 1964 there was a widely held belief that ‘refrigerator mothers’ ie cold, uncaring women, were the source of autism in their offspring. It took Rimland’s paper to produce evidence that autism has a biological cause and is an organic, long-term neurological condition. Still, it took decades for the original thesis to be fully discredited.

    Feeling shame around having a autistic child is something that exists to some extent even in western cultures. Producing a healthy child is something all parents aspire to and not achieving that – even if the cause is beyond our control – can feel like failure, at least initially. In China, children have a key role in providing for their parents in older age and bringing honour to the family. Having an autistic child presents a huge financial burden on the family, not just because the child may never find any form of productive work, but also any schooling may cost the parents heavily.

    The stars and Rain school in Beijing is one of very few resources for autistic children, where parents attend daily with their children for 11 weeks, being ‘trained’ to work with their children’s autism using applied behavioural analysis (ABA). These parents have to fund the course and find money for transport to and from school or lodgings nearby if their home town is a good distance away.

    Having a disabled child is felt to negatively reflect on the parents and the family. There are cases where such children are abandoned on the streets. If they are lucky, someone will take them in or place them in an orphanage. For others, their answer is to hide their autistic children from sight. These reactions condemn these children to lack of suitable educational input – what little exists at present in the People’s Republic - and will entrench autistic behaviours.

    Moving attitudes is a chronic process, which isn’t helped by lack of resources to support these families from diagnosis to educational and social interventions. Progress requires government acknowledgement and funding to shift the basis of autism provision, which to date is provided by largely non-governmental organisations or charities.

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Kate E Reynolds - blogging

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