March is fast becoming my busiest month. Last year, quite by accident, I found myself making a video to mark autism awareness day on April 2nd. Within 24 hours I had been sent over 150 pictures of children from throughout the UK, mostly by people who I had never met in person, and within a few days I put them together in a video along with some music. It was all new, and hurried and compiled without a great deal of deeper meaning. And in my enthusiasm, innocence and haste I never really gave it too much thought. I was more worried about copyright laws and technical issues of teaching myself how to make a video and upload it to you tube than I was about thinking about any deeper questions. But a year later I look at that video and ask myself one question?
Why is it always about children? See for yourself…
We are approaching autism awareness day once again. And if anything it highlights to me again how much it always seems to be about children. You would think autism was a childhood condition. You would assume that at 16 or 18 autism ceases to affect someone. But that could not be further from the truth. My children (yes they are still very much children and so I am as guilty as the next autism parent of making it about children) will both grow up to be adults with autism. It is a life long condition. There is no cure.
There are reasons why it may seem we hear so much more about children with autism than we do adults. Here are some of my thoughts as to why that is:
1. Children touch the heart-strings more. Charities get more money when children are involved. The innocence and vulnerability of little children seems to open up even the coldest of hearts. So like any condition, if it affects children, everyone is keen to go down that angle. A crying child, a clearly disabled child or an ill child seems to be so powerful. And with autism being a hidden disability it can be so tempting to show children in this light just to bring our cause to the forefront and show that autism can be just as devastating to a family as many other conditions. I have done it myself. And so much publicity about autism does it too. Because it works.
2. The majority of people with autism are diagnosed in childhood. When you first find out your child has any condition your natural instinct is often to find out more and to find others in the same position. And so support groups are born. It is natural to want to promote your cause when it has suddenly became all-consuming to you. Newly diagnosed families often need time to talk, vent and ask questions. Professionals don’t have the time and the after care is seldom there. So when opportunity comes to promote awareness parents of newly diagnosed or young children are often the first to want to be involved. They are desperate for support, inclusion and a sense of being part of something that makes them feel like they are helping their child.
3. Young children are not so aware of what is happening. This is something I am acutely aware of. My son has classic autism with learning difficulties and severe delays. He currently can not speak. His awareness of the world around him is very limited and although that may increase in time he is unlikely to understand difficult concepts like public perception, peer pressure, vulnerability and susceptibility. He may never understand, for example, the implications of having a mother who blogs about it. His twin sister, however, may one day be much more aware. She may have embarrassment, anxiety or upset at the thought of her image being used to promote autism awareness at some point. And I would be wrong to ignore her feelings on the matter. So parents of older children and adults are faced with the issues of protection and permission that parents of small children are not.
4. The more children grow up in a society of inclusion the more they do not wish to be seen as different. As more and more children and young people with autism attend mainstream schools and colleges the more pressure there is on them to not stick out. For many older children and adults autism awareness brings with it the reality that they have not actually been able to overcome their difficulties and somehow their disability is still visible. For a few this will bring major anxiety. For some adults this would involve admitting to work colleagues, neighbours and friends that they have a condition they have yet to discuss. So they would much prefer anonymity. That has to be respected.
5. After years in the system weariness can set in. Can you imagine 20 plus years of lack of sleep? Can you imagine having to fight every day of your child’s life for twenty plus years just to get basic support? Some of these families have been through so many campaigns, so many fundraisers, so many promotions, that they can almost feel it has seemed pointless. They hear stories of families with younger children still fighting for things they fought for many years before and it can become so disheartening so they disengage. But we still need to be aware of them. And we still need to support them.
6. Not all awareness is positive. Parents of older children and adults have come to realise this more and be using wisdom more in how to make people more knowledgable of autism. There is something to be said for this maturity.
As we approach autism awareness day remember, like everything else, we all deal with autism differently. We are all on a journey and sometimes it can appear to just be about children. When you next see an image like this bear in mind that there is a reason why you are seeing a child. But this girl will still have autism when the toy rainbow has long been forgotten. And she will still have autism when awareness day has passed by too.