A friend asked my to write a post about world autism awareness day. I appreciate this isnt a post about business marketing or social media. I have absolutely no problem if you want to stop reading now, and skip onto something a bit more, comfortable?
Some people reckon ASD (autism spectrum disorder) now effects around 1:50 people on the planet. Some say thats because we are getting better at understanding and diagnosing autism. Its certainly the case that the so called autistic spectrum of disorders covers far more ground than it used to.
As soon as my family was effected by ASD I started to realise that most pople dont have a single idea of what is at play. Its usually understood to affect kids, but most people think there is some sort of super power involved or that ASD children all go on to be scientists and mathematicians.
In order to be currently diagnosed with an autism spectrum disorder then you will have issues in three distinct areas. This is know as the triad of impairments. Most parents with ASD kids can tell you all about it
1. Problems with social communication
2. Problems with social interaction
3. Problems social imagination
This means children (and adults of course) struggle to make friends and have so called normal relationships. Autistic people are not often referred to as the ‘different ones’ these days as thats not very politically correct. More likely ‘ordinary people’ will be labelled ‘neurotypcial’ relating to the neurological element of ASD.
However, all parents with kids on the ASD spectrum know about the crushing pain of having a child that is ‘different’ no matter whatever the pc brigade call it. We watch them happily flapping or jumping around and on the one hand see our beautiful kids enjoying life, and on the other see other parents, and sometimes kids whispering about our darlings and trying to work out whats wrong with them.
Kids with ASD can have enormous problems with communication. Not only can they easily misunderstand facial expresions or miss the subtlties of every day communication (see point 1) they can also struggle with speech impairment or even worse, language impairment.
In a child with a language impairment, even if they can speak perfectly well, they may not be able to understand you, or have the ability to make you understand them, because they lack the language to do so. If affected, you will learn this is particularly heartbreaking.
The idea of restrictive interests and repetitive behaviours are most accessible to most people. They think of kids with OCD, and understand, and maybe even feel a little like they can relate. Unfortunately, almost all of the behaviours you would associate with ASD are common in the general, neurotypical population.
This issue is when all these behaviours hit these kids all at the same time.
And of course, they hit the parents at the same time too. And the rest of the family as well.
Far from having super powers, these kids and their families face a daily set of challenges most people will never understand.
Coupled into some of this stuff, are associated issues and health worries, like sensory problems.
Imagine a child that can’t bear the touch of their parent as they try to console them over yet another obsessive thought that has struck from out of no where.
Imagine what the parent of that child goes through. Every minute of the day. Every hour that child is awake (don’t get me started on the sleep disorders) every day of that child’s life.
There are of course, many ups to having a child with ASD. Their unique perspectives on life, the focus their intelligence can bring, the love they have in their hearts for their families, and the lessons they teach us as human beings.
But what doesn’t help is the uneducated, ignorant attention we get from people that have no idea what ASD is about or the challenges it presents our families.
We aren’t bad parents, try living with our kids for a day.
They are not naughty, or out of control kids. Try living with what our kids live with for a day.
Have a bit of sympathy. A nod here or a concerned look there goes a really, really long way.
‘Huffing’ past us as we drag our dear children along the floor of the supermarket again, makes things a million times worse.
Autism is an extremely complicated issue. There are a tons of differing perspectives and different organisations involved. They all have different views and different ideas as to a way forward.
What I know is that there isn’t an awful lot known about this stuff. And next to no money spent on trying to undertand it. I hope that over the next few years, as the Autism Explosion continues to grow, and the research money increases, we find out more, and understand more about how to help these families.
We dont really want anything else, just some help along the way. A bit of support for what we are all going through, just a little bit of acceptance for what our kids are going through and what they need in order to cope.
Im not interested in the politics, Im not interested in who’s right and whose wrong.
But I guess that acceptance all starts with awareness? Though some argue there is plenty of awareness around now, we need a little more positive action? Maybe a World Autism Acceptance Day?
Whatever, thats my little bit to help, thanks for listening.