Today is International Autism Awareness Day and it got me thinking…why is autism awareness necessary?
To answer that question we need to take a look at society itself.
I recently wrote about how we refuse to grant children the same basic rights adults automatically have, as a society, simply because they are children (and often without even realising it).
In our culture, we impose adult expectations upon children and bend and shape them to conform to an adult society to make it easier for ourselves and other adults they may come into contact with, sometimes before they are naturally developmentally ready to, such as insisting on them sitting still without moving or fidgeting, not impulsively speaking out and not reacting in an emotional manner under the age of 3 .
When mainstream parenting attitudes have conditioned us to balk at a 2-year-old who screams because her mother said they had to leave the soft play centre, what chance of escaping judgment does an autistic 9-year-old and his caregiver have when he is banging his head on the wall in a shop because he wasn’t allowed a can of coke?
I spoke to Sarah Ziegel, mum of four Autism Spectrum Disorder (ASD) boys aged between 8-18, and author of A Parent’s Guide to Coping With Autism about her experiences of navigating a judgemental society while trying to raise ASD children. I originally broached with Sarah my theory that if gentle, respectful parenting practices became more mainstream, there would be less need for autism awareness and more of a healthy move toward autism acceptance, with society’s adults becoming more supportive of a range of behaviours from all children as normal, developmental reactions instead of ‘naughtiness’ and therefore our culture broadening it’s often narrow and unsympathetic expectations of everyone within it.
Sarah explained that the problem with autism acceptance is that in many people’s minds this means that nothing can be done to improve an autism sufferer’s prospects of functioning in society beyond their current capabilities. “Some behaviours, particularly in severe ASD sufferers, are not normal at all,” Sarah said. “A 9 year old smearing their own poo on a wall is not compatible with healthy functioning within even a more accepting society.”
Sarah notes that, in her experience, people are much more willing to raise awareness for, and be accepting of, the types of autism behaviours that seem ‘quirky’, like fascinations with numbers or lining up objects, or which fit in with pop culture memories people can relate to, like the 1988 film, Rain Man.
“The problem with the label, ‘autism’, is that no one really knows what it is, even medical professionals and the parents of ASD children themselves,” Sarah told me. We discussed the way that many people hear that someone has autism and assumes that they will have a certain set of behavioural traits. However, autism is a spectrum disorder, meaning its effects on the sufferer, and the behaviours they exhibit because of it, range from mild to severe. There is no ‘black or white’ with ASD and, indeed, a child’s original ‘position’ on the spectrum is not necessarily static.
In her book, Sarah details the gruelling process she went through in fighting for her eldest twin boys to have access to Applied Behaviour Analysis (ABA), a treatment which examines causes and effects of behaviours and tailors the treatments according to this information . Successfully implementing ABA saw Sarah’s boys go from being severe ASD sufferers to having high-functioning autism (HFA), meaning they function in the world in much the same ways their non-ASD peers do.
While she’s keen to highlight this possibility to other ASD parents, she stresses that, like non-autistic children, every ASD child is different. Many can also suffer from ongoing and long term physical illnesses or learning difficulties intertwined with their ASD, so where one ABA technique works for one child it may not be effective for another.
“Light It Up Blue” for International Autism Awareness Day
I think my angle with bringing gentle parenting more mainstream was that, surely coping with raising an autistic child to the best of your abilities is hard enough as it is, without a good proportion of your energy being expended by then having to defend your child’s behaviour and how you respond to it by disproving members of the public who think “a child that age shouldn’t be having a meltdown”.
Gentle and respectful parenting is often wrongly assumed to mean permissive parenting, whereby you let your kids do what they want, when they want and sit back and watch them. On its most basic level, gentle parenting is about accepting children as whole people with valid thoughts and feelings and providing clear boundaries for them, to ensure they feel secure as they move through their many stages of development.
Gentle parenting is often seen as a ‘radical’ practice in a childist society, and by that I do mean discriminatory against children: our society demands that children never have emotional outbursts over things they find upsetting while allowing adults to do exactly that with them and creates laws which deem smacking children ‘reasonable punishment’  but prosecute the same action performed upon an adult, as just two examples.
What Sarah calls for in raising awareness for autism is for other parents and adults to be more accepting of unusual behaviours they might witness from a child out in public and also of the way in which their caregiver is responding to them; it may turn out to be a very specific response as part of their treatment plan.
To find out more about Sarah’s journey as a mum of four ASD boys you can visit her blog or buy her book, A Parent’s Guide to Coping With Autism, available from Waterstones, Amazon and all good bookstores.
Article originally appears on Huffington Post.
 Self-Control and the Developing Brain – Stanford University https://web.stanford.edu/group/sparklab/pdf/Tarullo,%20Obradovic,%20Gunnar%20(2009,%200-3)%20Self-Control%20and%20the%20Developing%20Brain.pdf
 Applied Behaviour Analysis (ABA) and Autism – Child Autism UK http://www.childautism.org.uk/about-autism/applied-behaviour-analysis-aba-and-autism/
 The Law on Smacking Children – Child Law Advice http://childlawadvice.org.uk/information-pages/the-law-on-smacking-children/