I’ve been part of the online world for a couple of years now. It has been an eye-opening experience which has taught me a lot about how people are raising awareness of a range of issues. It is something that I’ve also been drawn into doing myself, driven by the huge challenges I’ve faced as a parent of two autistic children. There is something ingrained in us, I think, that when we experience a challenging time we feel determined that other people shouldn’t experience the same sort of difficulties. We want to make things better for other people who follow us and we want people to learn from our experiences. It also helps us to come to terms with our own situations and to turn our experiences into positive action. That is certainly the case for me when I started this blog, a therapeutic outlet which also gave me an opportunity to talk to other people in the special needs community.
And it is through my blog that I have become aware of the multitude of voices all aspiring for greater recognition of autistic people, improved services and wider employment opportunities. It is impressive just how many people are working hard to achieve this in whatever way they can. Whether it is through the internet or in our communities there is a lot of good work being done.
But sometimes, I feel that the work of ordinary people is often overlooked in favour of high profile campaigners and celebrities. It is not that these people are not doing a good job; in most cases they are using their public position well to get a message across but sometimes it gets a bit tiresome seeing the same old faces and listening to the same old stories. Sometimes, I don’t even recognise their experiences against that of my family but that is to be expected considering the diversity of the autism spectrum. Of course this isn’t about me but about educating those who know nothing about autism and in this regard I welcome any public discussion of autism particularly when it is done in an intelligent way. However, I would still like to see recognition being given to ordinary people who are also doing their bit for autism awareness.
And I don’t just mean fund-raising work but the myriad of discussions that happen between people either online or face to face. People like the autistic man who gives talks to the local support group or the parent that is helping the teacher to understand their autistic child or even a debate on facebook or twitter. These conversations matter because they have the potential to inform others what it is like to be autistic or what it is like to care for someone autistic. Indeed when you start to think how many people are involved in these sort of discussions then this amounts to something quite tangible I think.
Unfortunately it seems that many people don’t appreciate how powerful words can be. They don’t realise that when you speak out loud about something or when you write something down you are planting ideas in people’s minds and these ideas can grow or spread. Instead there is a sense that if you want to have real influence you have to set up a social enterprise or support a charity but not everyone can or wants to join in with these ventures. I don’t deny that charities do good work in raising money and lobbying for better services for autistic people but it is not the only way that we can try and effect change.
We can also try to improve our own lives or that of our loved ones by explaining what autism or aspergers is to people around us. People like our family and friends, neighbours, teachers, doctors, the hairdresser – anyone who has contact with our autistic children. In this way we can challenge people’s stereotypical views that autism is Rainman, aspergers is an academic geek and that girls do not get autism. Just some of the many myths that perpetuate our society and present barriers to understanding people like my son and daughter.
Of course I am not recommending that you talk about autism or aspergers all the time because people will get bored and switch off. And neither do I recommend that you step in whenever some injustice happens because sometimes it is more important that we focus on diffusing a situation in order to calm our child. However, there are times when there is a real need to explain autism or aspergers like the time I sent a letter to my neighbours after they complained to the police about my son’s behaviour (my son was having a meltdown at the time). Click here to read more. Explaining autism and meltdowns to my neighbours helped me to regain control of a nightmare situation and whilst they have never replied I am hopeful that they have learnt a little bit more about our situation. I have never regretted doing this and I would do it again if I ever found myself in a similar situation.
This is why talking and writing about autism is as important as fighting for better services because one of the biggest barriers comes from ignorance which can lead to unwelcome stares, rude comments and even bullying and harassment. We cannot expect to alter these attitudes unless we challenge them and we can never expect people to start to understand autism or aspergers unless we help them to understand.