I have recently read a number of blogs, newspaper articles and social networking sites where people within the autism community have been hugely critical of one another. The latest article that I came across claimed that there is an epidemic of aspergers and high functioning autism that is taking support away from those with more severe forms of autism. It went on to say that aspergers and HFA were misrepresenting autism as being the higher functioning sort and causing severe autism to become unnoticed. There was also a comment to the effect that those with aspergers go on to experience a mainstream education, marry and have children; in other words have a ‘normal’ life. Whilst I sympathise with the view that severe autism may be going unnoticed in such a broadening spectrum, I felt quite offended that some people untouched by aspergers or HFA made such judgements about those who do have these disorders. Just because someone can talk, walk or lead what appears to be a ‘normal’ life does not mean that they do not have daily difficulties.
But rather than become drawn into an argument defending aspergers, I started to feel quite exasperated that I had read yet another article where the autism community appeared to be so divided. As a result I started to question whether I wanted to continue to blog about special needs. Did I really want to be part of a community that is becoming increasingly intolerant of one another? For a couple of days I even contemplated leaving the online world but then I thought that this was wrong as well. People shouldn’t feel so intimidated about sharing their experiences for fear of being shouted down.
Going down this road surely narrows healthy discussion and ultimately reduces awareness of just how diverse the autism spectrum is. It makes sense that experiences of individuals and families will mirror that diversity and yet it seems that people have forgotten this. Some people seem to make assumptions of other people based on their own experiences which is where I think some of the conflict is rooted. I appreciate that this is not always intentional; that there are people (like me) who are tired, frustrated and frankly desperate for services and whose emotional states may affect what they say. There are also those who just want to help but who may inadvertently come across as somewhat judgemental of others.
Nevertheless we have to remind ourselves that our situations are not necessarily the same for other people. Just because I have two autistic children doesn’t mean I know everything about the autism spectrum, far from it! I may know my children more than anyone else but I cannot fully appreciate how autism affects other people, particularly those with severe autism. Similarly, people caring for those with severe autism may not fully understand what it is like to care for those with higher functioning autism or aspergers. The point is, we all have very different experiences of living with autism or aspergers and that will be reflected in what we write and talk about. However, instead of criticising other people, we really should spend more time listening and supporting one another, regardless of which part of the spectrum we represent.
Yes I realise that the terminology of autism, ASD and asperger syndrome is part of the problem but surely we can move beyond that and value the contributions of everyone in the autism community. If we want to educate others then we ought to present as a cohesive community that is respectful of the views of all its members – individuals with an ASD, parents, carers, families and professionals. Let us not confuse the general public with our arguments; the autism spectrum is hard enough for them to understand.
Furthermore, if there is any reason to start working together now is the time. In an era of political tension and decreasing budgets, we really should start to move beyond our internal differences and pull together. Only then, in my opinion, can we have a strong collective voice and energy in which to challenge our governments and demand more support for every autistic person.