I am tired of the Autism tragedy song: Can we change the music now?

I am tired. So, so tired.

It is not a lack of sleep tiredness, but a heaviness in the core of my being kind of tiredness.

It is a tiredness that comes from trying to process a consistent incongruence, as if the soundtrack doesn’t match the story, and it makes everything seem wrong.

It is a tiredness that is brought on by being assaulted every day by a pervasive message boldly asserting that I should feel Overwhelmed, Isolated, Overlooked and Desperate.

Story after story after story after story in the media.

Campaign after campaign by peak bodies who want to get their hands on the pity dollars that will validate their beliefs they are helping.

Blog after parent written blog, looking for sympathy and reassurance that they are justified in exposing their children to the world and presenting them as burdens, blaming their kids neurology for all their own struggles.

Unrelentingly telling me that Autism is Bad, Burdensome, Life Destroying and Tragic. Reminding me, as if I could forget with the consistency of the dialogue, that people do not like Autism, or Autistic people.

They do not like my children.

They do not like my friends.

They do not like me.

And they expect me to join in with telling the world how Awful my life is.

They want me to join in with the chorus of complaints that my Autistic children make my life more difficult than my other children do.

They want me to nod gravely and make comments of understanding when parents lament the lack of services and respite as part of their sympathy response for abusers and murderers.

They want me to, at the very least, sit back quietly while all this goes on around me.

But, I am tired of it. And I will not sit quietly. I am trying to change the music.


Autistic people are human beings.

Autistic people have the same human rights as their parents do.

Autistic people have the right to respect, dignity and privacy.

Autistic people have the right to live the lives of their choosing, and to have access to supports that help them to do this.

Don’t tell me that this is alright for the “high functioning” “less severe” people, but that the rest are too challenging to be afforded these rights. I am talking about basic human rights that all of us have.

Don’t tell me that is is ok for me, my kids must be less disabled than theirs.

Don’t tell me autistic people bring it on themselves with their violent behaviour and unwillingness to conform to the abusive behavior modification compliance therapies they are subjected to.

Don’t even start justifying it all. I’ve heard that song before.

You don’t know my life, and you don’t know it’s challenges. I will not give you that sort of intimate information, because my children have a right to respect, dignity and privacy. And I should not have to compromise that to convince you to believe me. You so easily believe those who complain to you, without asking them to verify of justify. Why should I have to just because I am telling you a story that is unfamiliar?

Why won’t you believe me that it is possible to love my children, Autism included?

Why won’t you believe me that it is possible to choose contentment even when life didn’t turn out they way it was expected to?

Why do you stubbornly insist on telling me that I am wrong about my own life and my own experience?

All I want to say is that not all of us “Autism parents” want to play the poor me soundtrack.

Why won’t you listen?

And while we are at it- why won’t you listen to my children and my friends when they tell you they are happy? Why won’t you listen to us? Why won’t you listen when we say we don’t want to be changed? Why won’t you listen when we say the tragedy stories hurt us?

Don’t you like that music?

Are you so narrow minded that you will not listen to anything other than sensationalist headlines that at best shift responsibility on to lack of support, and at worst blame people for their own abuse?

Are you so happy to accept the dominant discourse that you won’t take a few minutes to listen to the people who are being spoken about for their side of the story?

Are you so stuck on the carousel that you can’t see the logic of wondering if there is anything other than that squeaky broken record playing?

It’s a shame. Because there is beautiful music for you to listen to if you choose.

There is joy and contentment, community and strength, respect and dignity and integrity.

There are people speaking up, wiring about their lives, trying to help you hear that Autism is not Bad, that Autistic lives are not tragic, and that Autistic people are not Broken or Burdensome. It might not be what you have come to expect, but it is certainly there. And you are missing it only because you won’t listen.

Maybe you aren’t as tired as I am. Maybe you can comfortably continue on, listening to the overwhelming dramatic buzz of the negative rhetoric. Maybe you don’t feel you need to listen to that beautiful music…. yet. But when you do, as I hope all of us eventually will, it will be there. My Autistic friends are playing it. My Autistic children are playing it. I am playing it. Listen. Just listen.

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