Autism world is rarely a calm and serene place.
In our case, that tumult very rarely has anything to do with
Billy. It has everything to do with what swirls around him – medical issues,
education issues, theories, beliefs about the condition and the curious tendency
the autism ‘community’ has of dividing and conquering.
This is never clearer than on the internet – in blogs, on the
comments sections of news sites and especially on Facebook.
To be honest, it feels like some kind of line needs to be
drawn in some kind of sand.
It feels like we, as parents, need to get a few things
sorted, so we can stop diverting from the really important things.
Those really important things, in my book, would be related
to understanding what the hell autism is in a thorough fashion, understanding
why so many kids are being diagnosed with it, and doing something about slowing
that diagnosis rate down.
The diversionary tactics?
These will take a little more detail.
There is nothing I find more damaging than the factionalism
that has grown in the autism community. Nothing. Not even the amount of time
and money we spend beating our heads against the chests of doctors.
What am I talking about?
The ‘well, my kid’s not sick, so the people who think their kids
are, are either wrong, crazy or just different to me’…
The ‘I need to tell people how to think (and I mean tell,
not share information that might offer an alternate perspective) because they
are deluded and ill-informed’…
The ‘I don’t like (insert public figure) therefore I reject
anything associated with them’…
The ‘people who believe (insert intervention or standpoint)
are all (down to the last one because I know them all) crazy, so that
intervention or standpoint is wrong’…
The ‘I love my square peg and anyone who wants to cure
autism is engaged in eugenics designed to de-quirkify the world’…
I could go on and on…
It’s challenging enough to untangle this kind of stuff in
interpersonal communication, but on the internet, it has a much wider and more
Instead of listening and actually hearing other people’s
perspectives, we use those perspectives to do the opposite. A difference of
opinion is interpreted as a personal attack, and discussion gets waylaid in
painfully pathetic arguments about a ‘lack of support’.
To me, diversity of opinion is instructive, inspiring,
stimulating, confronting, challenging… all those lovely valuable education-y
type words. Sometimes, it hits me in the guts, but that’s because I care about
the issue, not because it’s an attack on me.
Is it a reason to shut down thought? No. Is it a reason to
condemn others? No. Is it automatically a reason for me to think anyone
(including myself) is wrong in their personal choices? No. Is it an invitation
for me to instantly engage in rampant justification of my own standpoint? No.
Diversity of thought about autism, is just that, thought.
It’s all contributing to the giant pool of consciousness about a condition that
is NOT understood deeply. Doctors agree, researchers agree, academics agree –
autism is very poorly understood. As Billy’s paediatrician said to us last
week, ‘I really hope the science catches up before I retire, because not
knowing what’s going on doesn’t get any easier.’
Our perspectives as parents, should we choose to share them,
are just that perspectives, NOT edicts, or threats or instructions to others
about the validity of the choices they have made. And yet, so often, they are
interpreted as such.
We are all something and we are all nothing in this game.
Even if we have actually devoted our professional lives to
the active practice of research and understanding of the condition. But if
that’s you then, I’ve got a fair idea, you have lost the time (and the
inclination) to be offended by people’s reactions to the story about how you
learned to face the accusing stares in the supermarket.
There are bigger fish to fry here, people. Surely.
Facebook, blogs and the internet in general have been great
for information dissemination within the autism community, and conversely, they
made for a giant theatre of self righteous, playground gang style huffing and
puffing that distracts from the actual reason why information needs to be
shared in the first place.
As parents, we have a great opportunity to stand together, and
yet, we so often choose to stand apart.
We bicker about whether one therapy or another is the one.
We fight about how one personality is more right than the other. We build walls
around our own chosen camp to shut out the others. We seem to need to believe
that in order to be right, other people have to be wrong.
It is a short sighted stance that may make us feel less
attacked, or less guilty, in the moment, but that does NOTHING for the
community as a whole.
Why is this even important?
Because, beyond our own personal lives and our own personal
choices, there is a world out there. This world generally does not give two craps about autism, because
they have their own stuff to deal with. It is important, however, that they do
give a crap, because money and airspace are required to achieve one very
An understanding of autism.
We can extrapolate all we want from the word ‘understand’
(manage, treat, cure, slow down, respect, eradicate… whatever) but right now,
we do not understand enough. It is getting worse, not better. It is getting
harder, not easier. It is different now, than it was twenty years ago, and we
have no reason to believe this trend will stop.
We need the resources of the ‘real world’ (academics,
researchers, doctors, thinkers, bankers, politicians) to help in the
understanding process. But we are very unlikely to get that help when we aren’t
even willing to pretend we are united.
One would think the condition itself would unite us, but
clearly it doesn’t.
If we want to distract ourselves with arguments about more
or less autistic, more or less sick, more or less safe in the face of vaccines,
we are giving the world permission to give us some space until we sort our shit
out. They will take that permission and focus on some other very worthy
condition, as they should.
The more we cut each other down within autism world, the
more we are eroding the foundations of our children’s future, in my mind.
Right now, it feels (on the internet, at least, and
increasingly in the ever hungry 24 hour news cycle, as well) we are behaving
worse than children fighting over who has been on the swing too long. We are
not modelling behaviour well, to our children, or to anyone else. And I
completely count myself among the misbehavers. There are reasons for that
misbehaviour, but those reasons are not excuses.
I reckon we need to take a step back.
This is about people. About children. About our children.
This is about increasing numbers of children struggling with
everyday life in a way no-one wants to struggle.
This might be avoidable. This might be preventable. This
might be more manageable than it is right now.
But instead of focussing on the mights, we are hyper-focussing on the who-is-rights.
There is personal thought, and there is collective action.
In my opinion, we have confused the merits and functions of the two, in autism
So… where to from here?
I can’t tell anyone else what to do, and have absolutely no
desire to. But I can control my own behaviour.
I’m taking a step back in my viewpoint.
Billy is my personal life, and I live my life with him in
the best way possible, aiming for the best possible outcome, focusing on the
most positive methods and actions.
My desire to make change in how autism is understood, is
obviously informed by my personal journey, but that cannot be the only source.
Otherwise the whole world would be elbow deep in Thomas trains and have Youtube
hard wired into their brains.
My own child may well be one of the ‘sick’ kids, but he has
the same condition as the other autistic kids, in the eyes of the world. Whether
we like it or not, it’s all autism. We are on the same road.
Do I think our service providers are under-performing and
limited in their views? Yes. Do I think our government is under-informed? Yes.
Do I want things to change? Absolutely.
If I get have airspace beyond my blog (which will always be
informed by our personal experience) then I clearly need to think about everyone
and everything that autism entails. I need to de-personalise, in a productive
It can’t devalue my journey, to join others on theirs. I
need to nod, respectfully, and accept that no-one would choose this just to have a place to vent their views. They live it. We live it.
It’s a long and bumpy road (altered specifically to avoid
the wrath of whoever owns Beatles lyrics these days), that may well lead to
your door, autism community, but it goes much, much further as well.
It’s the condition that brings us together. It helps no-one
if it drives us apart.
Well, in all honesty, it helps for a teeny, tiny
self-contained moment, when I fist pump my virtual argument triumph… and then
it’s gone. Along with the smile from the Willy Wonka meme, and the good feeling
I get from a surprising thread on reddit.
That’s not enough to sustain any kind of meaningful momentum.
Not for me, at least.
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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.