Communications Shutdown – Autism Awareness – Not for me.

Today you might have seen lots of posts, or information about the communication shutdown.
It is an appeal to raise awareness of autism and how it affects those affected.  Unlike those of us who are neuro-typical, many children on the autistic spectrum have difficulty communicating their feelings and thoughts in an appropriate manner, and in an appropriate fashion.

The idea of the communication shutdown is to have people who have no experience of autism feel the frustration that communicating with the world entails, by not logging onto facebook or twitter.  They also support the campaign by using the application which will post their involvement to their accounts, and donating to the campaign.

 The truth is, that simply not being in contact with social media is not even a quarter of the way to feeling the frustration that people on the autistic spectrum feel every second of every day of their lives.  The people who are taking part in the shutdown have the luxury of being able to carry on with daily life and take enjoyment from doing the most basic of tasks, and will more than likely simply replace their online activities with something else productive at home or at work. 

A good idea of how frustrating it can be for some of these children is to try reading a book, and imagine that someone is placing a black sheet of paper over the paragraph every 5 seconds as you try to read it, and then see how frustrated you get with it.  I am all for autism awareness, and the money that is raised by the people who take part in the shutdown will be a welcome addition, although I suspect the ones who take part are those who are already involved with autism on some level.

The National Autistic Society in the UK is not an official partner of the project, but wishes them every success.   http://www.autism.org.uk/get-involved/campaign-for-change/campaign-actions/communication-shutdown.aspx

As a parent with two children on the spectrum, and looking like the third is as well, I rely on the NAS for much information and support.   Locally, a group of parents decided to take action on the fact that there were no clubs to take our children to, and we began a local parent led group which provides a play club for up to 36 special needs children.   

While I wish the campaign all the success in the world, the dangers of  large scale campaigns like these,  is that those of us who struggle to provide suitable playschemes and groups on the ground may find it difficult to source funds to help these children on a practical level.   The flip side of the coin is that every pound raised is another pound spent on helping our children indirectly.  It really is a double edged sword. 

My other reason for not directly supporting the communications shutdown is that the internet is my lifeline.  Living with children on the spectrum (or indeed any child with significant special needs), may be a difficult existence.  Twitter, for me, means the freedom to indulge in general chitter chatter that is not practical in daily life. 

Often parents, guardians and carers have little or no outlet for their own frustrations and difficulties.  Friends often fall by the wayside one at a time as their children get older and become more demanding on time and ability to socialise.  If taking away the communications network for even a day could have a potentially devastating effect for even one family, then the campaign is not for them.

On a day to day basis, life here is not easy.  One of my sons is struggling at his new school and may need moved to a more suitable environment.  Being in crowds causes anxiety which translates to disruptive behaviour.   Meltdowns occur on a regular basis, but we are used to those.

Would I change my children if I could.  Yes and no.  I have been asked in the past, and have sometimes heard parents of special needs children say that they would not change them for the world.  I would not part with my children, no matter how hard work they are, but at the same time, there is always a point in every day where I wish that they could have the type of life that a neuro-typical child has.  

You have to excuse the use of the words neuro-typical as I am not really sure how to refer to the children who do not have special needs.  The use of the word “normal” would seem to imply that special needs children are “not normal”, and this is simply not true as they are indeed “very normal” in their world.

I will leave you with that last thought as this is indeed a very tricky subject and one which has raised much talk and discussion today.