a letter J on a purple and orange backgroundIt’s a juggernaut, isn’t it a great word. I recall the very first time I read that word in a book. I was about 12 or 13 years old and it was in a book by Australian author Colin Thiele titled The Sun on The Stubble. It’s the first of three books in a trilogy about a community with German roots in a farming community in South Australia. I don’t recall all the particulars of the event but I remember that the protagonist Bruno and his friend were up to some boyhood mischief and then there was a reference to a juggernaut. I didn’t know what a juggernaut actually was but I did know from the context that it was something big, forceful and kind of unstoppable. Something that scared the stuffing out of Bruno and his mate.

So what exactly is a juggernaut? I checked it out, and it seems my initial idea and picture wasn’t too far off:

Simple Definition of juggernaut

 something (such as a force, campaign, or movement) that is extremely large and powerful and cannot be stopped.

Source – Meriam- Webster

Perhaps those that have described autism as an epidemic and catastrophe would relate to calling autism a juggernaut. Of course, we know this would be totally incorrect as we know autism has always been with us. An interesting article in the Boston Globe appeared recently, which even shows an identification of it far earlier than Kanner or Asperger, even if without a name.

So no autism isn’t a campaign or movement, it is clearly not a juggernaut.

So what is a juggernaut in the autism world?

I would identify two things. Firstly I would identify the juggernaut of the Autism Mom, the fighter against autism, the hater of autism. The Bullshit Fairy has written about this phenomenon wonderfully, but be warned profanity is not spared.

This juggernaut is one that needs to be stopped. Or, perhaps at least redirected and refocussed. If a juggernaut is impossible to stop, then perhaps this juggernaut of the autism mom should be redirected. There are many negative aspects of the autism mom phenomenon.

I have some issues with aspects of the autism mom phenomenon, this juggernaut that tends to push forward with its agenda regardless of what those around it are saying. Without being hypocritical I would highlight a few aspects that I have major issues with:

  1. A disregard for autistic voices
  2. A labelling of adults as too high functioning
  3. An easy association with the debunked idea of vaccines causing autism
  4. An uncritical alignment with ABA therapy
  5. A denial of identity first language
  6. A hatred of autism
  7. A constant desire for cure
  8. A willingness to subject autistic children to treatments they would not submit allistic children to.

Just a quick list. This is not the time or place to flesh it out and explain my issues around those things. It is though a place to think about the juggernaut of the autism mom phenomenon. And this is what I think has happened. The embryo of this a green locomotive travelling on train tracksjuggernaut was the lack of information, support, and services available for autistic children. Diagnoses was starting to occur in the wake of Kanner’s work, parents were effectively told their children were ‘feeble-minded’ and should be institutionalised. In the light of this parents began to gather together, to seek information, to try and work out what they can do to make the lives of their children better.

Groups banded together, they started lobbying, in the lack of information available voices got loud. Good things were achieved but also things that were not so positive. Significant voices within this community of parents skewed the focus towards talk of a cure, talk of biomedical interventions and treatments. And suddenly the focus becomes not on the betterment of the life for the child but on the curing and defeating of autism itself.

This juggernaut is then bolstered by the hatred of Autism Speaks and their narratives of I am autism coming to destroy you, and a generation of lost children. Bolstered again by Andrew Wakefield and his vaccine fraud, Jenny McCarthy and her publicity tours, and of course organisations like Defeat Autism Now, and the Doctors Against Autism.

With all this negativity about autism and defeating it, curing it and eradicating it, it is no wonder that the juggernaut of the autism mom has become one that largely does not wish to listen to autistics but to just defeat autism.

It is no wonder this juggernaut has grown so large and continues to do so, particularly with the ease of misinformation published widely under the guise of factual reporting. With sites such as naturalnews and its ilk, many are fooled into believing lies and frauds and so the juggernaut goes on.

This juggernaut needs redirecting back to its original purposes of understanding and providing the best possible outcomes for autistic children and by extension autistic adults.

Another juggernaut, that is somewhat younger, somewhat smaller but growing is the juggernaut of the autistic self-advocacy movement. With the wonderful work of people like Ari Neuman and ASAN, with the many Facebook groups and pages, with the articulate and competent autistic bloggers. This juggernaut is growing, gaining momentum, becoming a force to be reckoned with.

This juggernaut is not a juggernaut of destruction, though, it is overall a juggernaut of positivity. It claims a rightful postive status for autistic individuals, children and adults alike. It makes statements like:

  • We are different not less
  • Nothing about us without us
  • I am actually autistic and no I don’t want to be cured
  • I am not sick I am just different
  • Embrace neurodiversity
  • No, I am not a burdern
  • Just because I can’t speak doesn’t mean I have nothing to say

This juggernaut wants to change the negative narrative. It wants to educate the wider community about what it is, what it feels steam locomotivelike, what the experience of being actually autistic is. It says, yes I can take my place in society and contribute just as valuable as others.

This juggernaut says no to cure, yes to care. This juggernaut says no to hate and yes to celebration. This juggernaut says awareness is a start but acceptance is the first goal, followed by celebration and onto pride.

Yes, this is a good juggernaut.

This juggernaut needs to roll on.

J is for Juggernaut.

(With thanks to Laura Moriarty for the idea for this piece).