Wednesday, April 30, 2014

Autism Acceptance Month 2014: Ally Grace

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Ally Grace. Please read, listen, and share.

A bit about me: I am an autistic woman, and I live in a household full of autistics. My partner, Bart, and my four children, are also autistic. We live in Australia. I love to read and write, and I am a proponent of radical parenting reform and radical education evaluation; especially in regards to autistic children. I have a strong belief in the abilities of all children and adults to be highly motivated and ethical beings, and I dream of a day when more trust is put into our autistic children and adults. My own children are raised without the use of Behaviourism, and without coerced learning. I have an interest in social science and philosophy, and in the patterns of social change. I blog about family life, my thoughts, and my own experiences, at suburbanautistics.blogspot.com.

What are some things you like people to know about you?

I would like people to know that I care a lot about other people and all sentient beings, and that this way of feeling permeates everything that I do. I would like for people to know that judging my character and intentions by first impression or by how I act under duress is not going to be accurate and that it will hurt me to see you so rashly draw a conclusion from such little information. I would like people to know that when I say something about myself, it is true and authentic and it is not some social ploy to make you think something specific about me, or to fit myself into some kind of mould or category or group. I would like people to know that it is very painful being misunderstood so often, and that taking the time to really get to know me, is appreciated more than I can say.

I would also like to communicate that I am lots of things, as all of us are. Being autistic does not give my soul less dimensions. It doesn’t make me simpler. I am anxious and silly and honest and passionate and kind. I am happy and sad and angry and scared, and loving and dedicated. I am a child and an old woman and a mother and a lover. I am driven and I am relaxed and I am content and I am always striving for better. I am lost and I am free and I am home and I am searching. I am complex, like all of us are, and I love that complexity and that mess and that imperfection.

Yeah, that is what I would like to communicate most of all about me. That I am a contradictory mess of human-ness.

What are some things that make you happy? Why?

A lot of things make me happy. Being in the sun makes me happy. The kind of sun that feels like a blanket of glorious warmth, covering  my legs and my face and my toes and making my hair warm to the touch. I love the smell of Eucalyptus in the breeze, and the smell of a bonfire on a cold day. I love to prepare a meal from scratch and savour everything about it.

My children’s independence, freedom, and spirit, make me happy in ways that cannot be described well enough to justify trying at all.

Having a lover and constant friend to share my life with; gives me a deep happiness that I am only just beginning to realise and fully acknowledge.

What makes me passionately happy in a way that makes me really come alive, is solitude used for writing and thinking and collating information. I love the observations that solitude allows; the noises of the world, the smells in the air, the colours all about, the words incessantly spoken, the shapes and the patterns and the signs and the faces. Those tiny huge things that others don’t seem to really notice. Those tiny huge things that paint the big pictures that only observers can see. I love the jumbles unravelling and becoming clear. I don’t recall a time when I ever had to pull apart the jumbles. I always saw the parts, and I suppose this is what told me that I was different somehow, even before I learned about autism and long before I learned that there were other people like me.

What are some things you avoid whenever possible? Why?

I avoid going to new places without some kind of escape plan or an in-depth understanding of what it will be like. I have all kinds of issues with direction and becoming lost and disoriented. I freeze up so often when under stress, that I tend to become dazed and distant. It feels a bit like an out-of-body experience. This does not feel safe to me and so I will avoid getting myself into positions like this. This is why I like familiar places and hangouts.

I have a deep fear of the cold. I am also afraid of loud noises, especially shouting or fighting. I will do whatever I can to escape those two things -- they invoke a real and all-encompassing fear within me.

What features does your ideal living space have, and why?

My ideal living space would have a library full of books of all genres and times. It would be sparse otherwise but I would love places of colour and excitement. Somehow it would need to combine novelty and adventure; with safety, love, company, challenge, and solitude. I love travel and newness, but with enough security that I can feel safe even within the unknown. Organised chaos, is perhaps how I would best describe my ideal living arrangement. I think the setup would be something very sparse, like a motorhome or even just a bag; but then I would have some kind of safe and constant space too, for down time. I have ADHD as well as being autistic, and sparseness works best for my busy mind.

What are your favorite books, movies, and/or TV shows?

My favourite book series is The Best Australian Essays project. I gravitate toward gutsy writing and narratives in which people deliberately push through the social expectation that we should all be pleasant and appropriate. I think this is why I love the essays -- written by people who speak up and talk in depth about topics that most people don’t want to think about. I also really enjoy the older works of Western philosophers and the wisdom of Indigenous people. My favourite film is Strictly Ballroom and I like social documentaries. I am also a massive Tim Winton fan.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I think, to put it simply, that actual autistic experience is what we should see more of; rather than what autistic experience looks like to a non-autistic person observing them, and rather than what other people think about autistic experience. It seems like about time that we acknowledge things from the perspective of autistic people, as opposed to the perspective of everyone but them.

What are some things you'd like the media and other people to stop saying about autistic people?

I’d like society in general to stop thinking that observing autism from the outside, is any way to accurately learn about it. Whose idea was it to sit and watch autistic people, making notes in a clinical setting, rather than actually asking autistic people what it felt like to be them? Western Science is not as impartial as it believes itself to be. I’d love for society to stop viewing autism in terms of “behaviours” and to instead see autism as an entire means of life. I’d love for outsiders to stop instantly and intuitively attributing motivations to actions -- the autistic person can state their own motivations and NT assumptions are usually wrong.

Some phrases I think should disappear in reference to autism (unless these ideas are being challenged or discussed in depth):
  • “black and white thinking”
  • “violence”
  • “mental age”
  • “burden”
  • “emotionally deficient” or “have trouble feeling emotion” or similar.
  • “cannot see things from the perspective of others”
  • “behavioural training”
  • “epidemic”
  • “indistinguishable from peers”
  • “cure”
  • “hate”
I would like to see a base respect for autistic people, any time autism is mentioned. That would involve all of us being mindful every time we speak, and it would involve the NT population to start to think of things from the autistic perspective instead of from the dominant NT perspective that is so normal in present time.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I would love for autistic people, of all ages, to be able to communicate that something is wrong or that they do not like something -- and to have that respected and listened to. In my own home, my children tell me what bothers them and they tell me what is going on with them. People often express disbelief that I know what is going on with them; however, it was them who told me and not something I did that was somehow clever or amazing!

It seems that this idea of actually listening to autistic people and believing that they have valuable things to say, is radical in itself. I think it would be great to see all autistic children and teens and adults, given this same chance and then having their words respected. Too often, we just do not get listened to when we communicate things that are vastly important to our well-being and happiness and coping abilities. Whatever means we choose to communicate, we have not been listened to in the past, and that is what I would like to change most of all. We know ourselves better than anyone; and it is a very dangerous thing for outsiders to believe that they know us better than we know ourselves. We are capable! With the increase in communication options for autistic people, this is now more possible a dream than any other time in modern history.