Tired of the divide

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.

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13 thoughts on “Tired of the divide

  1. I have come across this divide on a very personal level. Parents of people who are deemed “more severe” basically discounting my experiences just because I have a HFA label and appear to be more capable. Just because I appear more capable doesn’t mean that difficulties are not there they are just more subtle.

  2. Well written as always. Am so glad I haven’t come across any of these non-supportive posts, as it is quite upsetting to think that the lack of understanding is there even within our own community. I don’t think any of us can really know what someone else’s life is like, either with or without special needs involved, so there’s no point in being judgemental – we rarely have all the facts. There’s more I’d like to say, like you I’m sure, but to avoid the backlash you’re right, we should just agree to stick together – one voice is stronger.

    • Thanks for dropping in Steph. I see it a lot, this internal division, and its so exasperating. As Fiona says its the usual tactic of divide and rule which the politicians love as it deflects from them. What we really need to be doing recognising that in large numbers we are a more effective force when campaigning for services.

  3. I suppose sometimes we think that people living with autism will somehow be ‘better’ but of course they represent a cross-section of society, and so there are people who are mean, people who are judgemental and people who are blinkered and so wrapped up in their own problems that they don’t see those of anyone else. Don’t let that put you off blogging Deb, your articles are always so intelligent, they really help with raising awareness and improving understanding xx

    • You are right. I have to remind myself that being judgemental and selfish spans the whole population, regardless of who we are and what we do. Thanks for the comment. x

  4. I love when people say that Asperger’s is “mild”. To me, autism is like cancer, either you have it or you don’t. A person with lung cancer wouldn’t downplay another person’s skin cancer, would they? The important thing is to get support from one another, not to down grade another person’s disability.

    • That’s a great analogy Jim. Its like my eldest daughter who has asthma. She receives medical help to control it and to prevent her becoming very ill and in hospital. Nobody denies her that because her condition is less serious that someone who has lung cancer. People are accepting of both conditions.

  5. About a year ago I had a rant on my old blog about a post I came across (you might well of commented infact). It was a lady with a severly autistic son who basically said that children who were now being diagnosed with aspergers and similar were taking funding away from children with severe needs and it shouldn;t be allowed. If the child was capable of main stream school and everday life there was no problem other than them being a loner or not conforming to the norm, and/or the parents being a problem and there being nothing wrong with the child. She basically said they did not deserve any resources or help. I was fuming. My son is very mildly aspergers but it has an affect on his life, not just his but ours as a family. It is thanks to the support of the school and doctors that he is able to function so normally, without that supportI think he would be in a very diffferent position. I think your post is very wll written and you are right, the community as a whole needs to pull together not go against each other.
    You are tagged by the way over on my blog x

    • I remember the post well! Glad to read your son is doing well. Getting the right support in place makes all the difference. Deb x

  6. As ever a well thought out and balanced piece of writing which cuts straight to the quick. We really do need to leave behind that which attempts to seperate us as a community and unite. As the UK government cuts more and more services it is vital that we stand together against this onslaught. It’s an age old tactic of divide and rule and we are fools if we don’t recognise this and refuse to be drawn in. Them and us, severe and mild. It doesn’t matter. It just gets in the way of the real issues. Funding, services etc., and the Condems love it!
    Well said Deb xxx

    • Thanks Fiona. Like you, I wish people could see how arguing between ourselves makes us weaker when campaigning. We really do need one voice if we are to have any social impact. Deb x

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