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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21 Responses to Tired of the divide

  1. greenfroggyfae says:

    I am so glad that i am not the only one who has noticed this, I am currently trying to seek help for my youngest and have him assesed (mainly for the sake of school) trying to find understanding people who can offer advice rather than give me what the GP’s are trying to pull and put it down to a bad parent trying to find an excuse for how her child is, when all i am trying to do is gain information from many places so i can have as broader awareness to the whole spectrum and where if any my son fits in.
    there seems to be a ‘competative’ feel at times but let me finish by saying it isn’t just in the community you are part of, it is apparent in all communities and is the reason behind me leaving them.
    i’ve only just found your blog so please do not stop as i am sure it is going to be of great help not just to me but for others.

    • Aspie in the family says:

      Hi, thanks for commenting. I think you are right about the competitive nature in all communities. I personally find this stressful and I try to keep out of any potential arguments. I worry that these sort of divisions and arguments are going to put some people off from sharing their experiences which is not good. Families like mine are isolated enough without the added feeling of intimidation within the community that is supposed to support them.

      Good luck for the assessment and I hope you will find the support and information that you seek.


  2. sharon30 says:

    i am new to this site so i never read her blog. I have a daughter with asd aspergers in perticular and find it very hard to cope at times,i can not beleive that any mother of a child with autism could be so ignorent about another childs condition, all our kids are different thats what makes them special

    • Aspie in the family says:

      Thanks for commenting Sharon. I agree with you; all children on the autism spectrum are unique and present very differently.

  3. Tania says:

    Very thoughtful post, echoing my own views.

  4. Jana...lifewithautism1 says:

    I have found the same but don’t give up, we will miss you.
    To everyone else….
    I think it is so wrong to comment as some people do. Sometimes it feels a little like a spoilt child who says ‘my ice cream is bigger than yours’, so what!!! We are here to share and to help others who might find a common ground with someone which in turn helps them and us!
    I have the problem that because my children walk and talk people think they are ok but they are not. When stressed the words still don’t come out! So they walk but can never walk alone as have no road sense or sense of danger at all! They still need constant care and help, just in a different way!
    My son is higher on the ASD scale than my daughter and sometimes I wish my daughter was higher up too, then she would not be so over sensitive to the world out there and what people say and would not spend most of her life in tears because people make fun of her/bully her just for being different.
    What most people forget is that most ASD people, especially those higher on the scale, normally have other disabilities alongside the Autism …even though they are not always diagnosed . Some Doctors decide that the one diagnoses is all the parents can cope with or that the child doesn’t need another one to get the help needed.
    I always thought my son’s absences were to do with autism…they are not , it’s a mild form of epilepsy which often goes undiagnosed in children with autism and just put down to switching off for a bit . I could run a list off of what else is wrong but I won’t as most of you out there also have other problems on top of the Autism and diagnosed or not, you know what I mean!

    As I learnt from an Autistic specialist, no 2 children with autism are the same, she also said that the more she learnt, the less she realised she knew and this is a lady top of her field! It’s still a very open book still!

    BUT I think we get enough criticism from the world out there and nasty comments from people who do not understand, we have all been there……… in tears when out and about because someone has judges us wrongly when our children have not been at their best. That we have all experienced!! the looks the stares, we all get it. Life with a child with ASD is hard in different ways for many people and life will never be the same when you have a child with Autism but the one thing we should be able to count on is an understanding from others in the same boat. It is sad when people in the ASD community turn on each other when the World is already turning on our children. Until you have walked in someone else’s shoes, do not judge, you might be amazed how wrong you were.

  5. Jack says:

    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.

    • Aspie in the family says:

      Thanks for commenting Jack. I’m sorry that people have discounted your experiences like this. We’re having very similar difficulties with our daughter who has aspergers syndrome. Because her difficulties are not always obvious, her school refuse to acknowledge just how difficult her daily life can be at school.

  6. Steph says:

    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.

    • Aspie in the family says:

      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.

  7. Blue Sky says:

    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

    • Aspie in the family says:

      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

  8. Jim Reeve says:

    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.

    • Aspie in the family says:

      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.

  9. the rambling pages says:

    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

    • Aspie in the family says:

      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

  10. Lizbeth says:

    Amen and very well said.

  11. fiona says:

    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

    • Aspie in the family says:

      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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