2 Apr 2012

Awareness, Acceptance, Action

Today is World Autism Awareness Day and marks the start of Autism Acceptance Month.
Awareness is a useless, nebulous concept. Only acceptance, action, understanding and support matter. I would like to see the day rebranded as Word Autism Action Day.

I oppose the "Light it up blue" campaign for autism awareness as it is an Autism $peaks backed movement calling for funds to "research into the causes, prevention, treatments and a cure for autism". I'm not going to support an organisation dedicated to eradicating autism.

However I am as impressed by the UN Secretary-General's message for the day as I am critical of that from the Vatican. Leaving aside the unfortunate but ubiquitous puzzle-piece imagery illustrating the piece, Ban Ki-moon has a good understanding of autism and the needs of autistic people. He realises that autistic children become autistic adults, a simple enough concept you may think but one so often ignored:
"Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement."
I applaud all of his message but particularly like:
"Greater investments in the social, education and labour sectors are crucially important, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents
World Autism Awareness Day is meant to spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.
Let us all continue to join hands to enable people with autism and other neurological differences to realize their potential and enjoy the opportunities and well-being that are their birthright."

It's not what we have now but we can create this world. We autistic people, parents, friends and supporters, those who are accorded the label of allies; we are tough, tireless and committed. OK, we are in truth often exhausted, overwhelmed, frustrated and worn down but we keep on going because we have to. We either know what needs to happen or know how to listen to those who have personal experience. We can advise, campaign, advocate and shake things up until it's right. We can support each other, learn from each other and keep working on advancing the civil rights of autistic people.

Today as on everyday, my boy will be happily autistic. I love him to his core, I don't wish a part of him away because that would leave a different child, not the one I gave birth to and have raised for almost 12 years. Today and always, I accept autism.

1 Apr 2012

Vatican's Autism Message

They've never heard of the social mode of disability down at the Vatican. This is a breathtakingly backwards view of autism. Archbishop Zygmunt Zimowski, get in touch and I'll set you straight on a few things.
Here's his take on autism:
"On the occasion of the Fifth World Autism Day, the Church intends to express her nearness to those who are burdened by the weight of this profound suffering. In large measure still to be explored, autistic spectrum disorders constitute, indeed, for those who are affected by them, a grave alteration of behaviour, of verbal and non-verbal communication, and of social integration, with a wide-ranging effect on the normal development and evolution of the personality."
(Emphasis mine)
WHAT!? Such disdainful, othering language. The problem, Zimowski thinks, are the disordered, abnormal "gravely altered" autistic people.

I wonder if he ever knowingly met an autistic person or did he just ask Tony Humphreys what they're like? If he spent any time connecting with a few autistic people himself, he might realise how wrong he is when he says:
"In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds."
Such florid nonsense.
This is a 45 year old Bettelheim-era and utterly discredited vision of autism. Autism doesn't mean closure to the outside world. And what barriers of silence is he talking about? I know some autistic people who don't speak but none who are silent. Not all autistic people are children. Not all families with autistic members are closed up, marginalised and wounded.
Zimowski continues:
"The Church and all people of good will thus feel committed to being ‘travelling companions’ with those who live this eloquent silence, which calls upon our sensitivity towards the suffering of others, following the emblematic example portrayed in the gospel parable of the Good Samaritan."
"Eloquent silence". Oh wow.

It's too awful to go through this line by line but here's a selection of words this pillar of the Catholic Church uses to talk about autistic people like my wonderful son. To the archbishop they have:
  • "a pathology which affects more people in numerical terms than could have been imagined only a few years ago"
  • "the gravest and most devastating disability"
  • "a grave psychological disturbance"

And they are:
  • "people with autistic disturbances"
  • "enveloped in the mystery of silence"
  • "a living and transparent sign of the presence of the Resurrected Christ in the world." 
No Archbishop, they are people living with a disability in the same real and right-now world as everyone else. They deserve, like all people to be treated with kindness, respect and decency. They do not require your pity or your depction of them as disturbed and mysterious ciphers. They need to be listened to, understood and accepted. It's not difficult.