Talking about the C word

In our family we talk about the A word when using the boys PIP (personal independence payments) or other paperwork to gain carers go free or discounted entry.

But there is now the C word which has lately become non PC to use, to write about or even to discuss openly. The ND (neurodiversity) movement has become increasingly political (the Labour party has formulated an autism neurodiversity manifesto) and it does not appear to acknowledge any need for the C word.

What is this terrible word? Cure. Sometimes used with inverted commas either side of it as if it is an inappropriate word.

We are told to embrace autism. It is a superpower. That if the world were more aware and accomodating of neurodiversity, then autism would not be a problem for anyone.

Try telling that to the parents whose children self harm. Whose children are unable to voice their feelings, their basic needs. Who at worst are detained in ATUs (assessment and treatment units) often miles away from their families.

Try telling those parents that we shouldn’t seek any type of cure.

Until we know what really causes autism or rather autisms as they should be known, as the spectrum is now one single word encompassing a huge variant of conditions, then how do we know that there is not something which may help some of those children and adults in the part of the spectrum where superpowers are not to be seen?

It is known that there are some medical conditions linked to autism.  According to Autistica.org.uk up to 3 in 10 autistic people also have epilepsy and up to 4 in 10 people with epilepsy also have autism.  That statistic is confusing but shows a high correlation between autism, which is seen as a neurological difference and epilepsy which is a diagnosable medical condition.

Scientists have also found linked genes to gastrointestinal symptoms such as chronic constipation and GERD (gastroaesophagal reflux disease) and autism.

If a non verbal child has severe pain, how can they tell us? We may be trying to get them to eat food or get dressed but they have pain. Is it likely that they will eat? is it more likely that they will scream and cry and retreat?  Is this part of their autism or due to  medical symptoms? can we separate the two?

Therapies for children such as ABA (Applied Behaviour Analysis) are slated and critised by those who think our children should be left to develop without intensive help. This argument does not make sense to me. We send our neurotypical children to school to learn to read and write, we teach our children living skills, we teach them social skills. Why do our children with autism not deserve to learn those same skills? Why do they not deserve to have a degree of independence? Therapies such as ABA may mean the difference between a future of living at home, leading a happy, useful life or living in institutionalised care (which may also be happy but very expensive) or worse such as being detained in an ATU.

ABA is not a cure. It is a method which maximises our childrens’ potential. Treating  GERD is not a cure. But a child without pain is a much happier child who perhaps will have less autistic behaviours due to the treatment of their medical issues.

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