Autism Awareness Day and my Facebook feed is full already with posts from individuals with autism, parents and organisations that want to use this day to raise awareness of autism with the world. I am doing my bit too with this blog and a busy day planned off the internet too.

What are we hoping for? What do we really want and expect to happen as we blast out our thoughts, feelings and demands for autism awareness across society? Is anyone listening?

Over the last few years there has been a shift in mainstream media getting involved. The Independent newspaper has a 16-page Autism Special and we (that is The Autism Directory.com that I am Founder and CEO of) have a column in there. At lunch time we will be at The Senedd (the home of the Welsh Assembly Government) as sponsors of the launch of the Autism Heroes Awards, and then later I am being interviewed on BBC Radio Wales afternoon show. So it seems the platforms to be heard are growing, so what is our message?

Awareness I believe is the starting point, not the goal. A milestone along the way to a more compassionate society that accepts everyone for who they are and cares enough to understand people’s needs and goes some way to accommodate them.  This isn’t a new concept. In the news recently has been the acceptance in law of same gender marriage which in the beginning was beyond the wildest dreams of people who just wanted to be accepted for who they are and have the same rights and privileges as anyone else. It started with awareness.

In fact ‘difference’ is rather commonplace in our society, yet we are all fed the belief that being different is not good and that we should all comply to the ‘model’ of what’s considered normal. This is just bizarre yet we see it everywhere in the media messages about our body size, hair colour, gadgets we must have and the list goes on. Who on earth decides what’s normal? Oh yes, our own created consumerism society. Ok I’m at risk of going off topic here so back to Autism.

Autism Awareness is a starting point to create an understanding in the wider society we live that those with Autism do have additional needs in order to be accepted for who they are, and to access the same level of care and support that others do.

As a mother of a child with autism, I have found that many organisations I have to deal with in my daily life that do not have a basic understanding of autism, make the things I have to do that little bit harder (and a lot harder in some cases), which in turn makes family life difficult, and puts my son in a position where he doesn’t receive the same respect as other children in society.

This impact can be experienced across many areas of life. For example, when I am dealing with health professionals, they simply do not ‘get’ the extreme level that my son can go to with his self harming. At the Doctors the other day I mentioned his meltdowns and the Dr respond with “his tantrums”.  Most health professionals don’t understand this difference and cannot relate to the reality of a child harming themselves without conscious thought. So my concerns just get dismissed and I get put in the ‘paranoid mother’ box.

Other areas such as education, emergency services, social services to name a few that autism families deal with on a regular basis do not have the basic level of knowledge about autism to support the families they are there to help. This puts parents like myself on a constant education mission, improving the understanding of those we meet one by one. However we are not often listened to as we are not ‘professionals’ (when in the parent role at least).

Daily life activities like shopping, recreation activity, eating at a restaurant also involves some level of ‘explanation’ to others about why we need things to be a certain way, or why we cannot conform to a particular rule they have.  Some may think we are just being difficult, or ‘playing on the autism label’ to get things our way.  Believe me, at times I would love to be able to conform just so I didn’t have to go through the constant explanations that keep reminding us that we are in the ‘different’ box whenever we leave our front door.

Autism Awareness is something I do every day, not just in April. However, I do understand and appreciate the opportunity of such a day  to raise the level of understanding across society maybe just that little bit more.

With love and gratitude,

Nadine.