Friday, March 29, 2013

Meet me half way

April is becoming widely known as Autism Awareness Month. I will be writing a fair bit about this at Amazing Adventures over the next few weeks, so if you are interested in that go over and have a look. I am focussing specifically on Acceptance of Autism. I am going to devote one post to Autism Acceptance here too.

A wonderful Autistic lady recently shared some thoughts with me. She used percentages to explain something very significant. She was telling me about a phrase that has been said to her that she finds particularly troubling -

"Meet me halfway"

I'll do my best to explain why she finds this statement problematic. You see, when you are Autistic, there are a lot of things going on that Allistic people (people who are not Autistic) do not experience.

Let's imagine for a minute.

Consider what it would be like to go to school with all your senses on high alert. Lights are too bright. Sounds are too loud. People jostle up against you and it causes you pain and distress. This happens every day, so you get to anticipate the experience before you go, which makes you feel anxious. The whole time you are there you feel uncomfortable. People expect you to interact with them and look them in the eye. They want you to engage in conversation and join in with their games on their terms.

You want to go to school and learn, and be included, but it takes a lot of effort, and even when you try your hardest you are still seen as different and weird. Sometimes people laugh at you. Sometimes they won't include you. Sometimes they call you dumb. But you keep trying and trying. It makes you exhausted. (If the situation I am describing here is a new concept for you, a good place to go to read more on this is Mama Be Good)

Then you can't cope any longer. You might raise your voice at someone, or have a cry, or refuse to do an activity when you are asked to. When that happens you get in trouble. You are told to try harder.

My Autistic friend has been told numerous times in her life (by people she was supposed to be able to trust) that they are trying to help her, but that she needs to "meet me half way" if things are going to improve for her. I have come across this attitude as well in the short time I have been advocating for my kids. I was told by a teacher that she "couldn't" do any more for my son because she had other kids in the class and he would need to figure out how to cope better.

What people don't realise is that with all that an Autistic person has to manage and cope with, before they even leave the house to come out and be where you will see them, they have already done at least 75 percent of the work needed to interact with you. They have dealt with the stress of getting themselves out of the safety of their house and into your environment, dressed in a way that is considered socially acceptable (as opposed to how they feel comfortable- for example my son finds his school uniform shirt incredibly scratchy and irritating). Then they put themselves into a loud bright environment, talking to you and conforming to your expectations in order to keep you comfortable so that you will accept them. This covers another 15 percent of the distance. You are left with 10 percent of the distance to cover to help them in the interaction. And many people still want Autistic people to cover 50 percent of that last 10 percent. Can you see how ridiculous this is? How insulting? How invalidating?

how important is it to make eye contact?

Realising this made me wonder how important it is that my kids look me in the eye when we are talking. 
how important is it to dress "right"?

It made me wonder how important it is that they dress "right". 

It made me wonder how important it is that they follow some of the social conventions that exist purely to keep everyone feeling comfortable and unchallenged. 

Let's talk about stimming as an example of behaviour that challenges social conventions. 
Here are a couple of explanations of stimming.

Nick Walker defines stimming this way-
"To stim is to engage in movement and/or in other activity that stimulates one or more of one's senses, for the purpose (whether intentional or purely instinctive) of regulating one's own sensorimotor experience and/or state of consciousness. Examples of stims include (but are certainly not limited to) such activities as rocking, hand movements, humming, drumming, touching a surface, or gazing at running water. Functions of stimming include (but are certainly not limited to) self-calming and self-soothing; inducing, enhancing, or responding to experiences of sensory pleasure; regulating sensory input; integration of information; and accessing specific capacities and/or states of consciousness."

"It is a message that says that I have so much to express and cannot hold it all inside and I must show you right now.
It is joy.
It is an all-encompassing feeling that touches every part of me, from the top of my head to the bottom of my feet.
What it isn’t is shameful."

FY Stimming! gives definitions and examples of stimming, including this quote from About Autism-
"Stimming is almost always a symptom of autism, but it’s important to note that stimming is almost always a part of every human being’s behavior pattern. If you’ve ever tapped your pencil, bitten your nails, twirled your hair or paced, you’ve engaged in stimming.
The biggest differences between autistic and typical stimming are (1) the choice of stim and (2) the quantity of stim. While it’s at least moderately acceptable to bite one’s nails, for example, it’s absolutely unacceptable to wander around flapping one’s hands.
There’s really no good reason why flapping should be less acceptable than nail biting (it’s certainly more hygienic!). But in our world, the hand flappers receive negative attention while the nail biters are tolerated.
Like anyone else, people with autism stim to help themselves to manage anxiety, fear, anger, and other negative emotions. Like many people, people with autism may stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.)."

Why should I discourage my kids from stimming if it helps them regulate the sensory input they are experiencing? Should I stop them from stimming so others don't feel a bit confronted by their "unusual' behaviour? The thing is, in our house stimming *is* usual behaviour, and it serves a valid purpose. So perhaps, other people can cover a bit of that distance and cope with it? Maybe they can even cope with it without making faces and comments behind my kids backs?

It is not an easy thing as a parent to confidently let your child be who they are in public, even when you know that is the right thing to do for your child, when you know the result will be other people judging your child as less, wrong, broken, defective or something needing to be cured. It takes a lot of resolve, and a very thick skin to weather the looks of judgement and sometimes fear when your child has a meltdown in public. And as my kids get older it will take strength and courage for them to be themselves in public as they become aware of what society in general makes of them.

Acceptance of Autism, true acceptance- where my kids are seen as being fine the way they are- would help with this problem. If people would be open to the thought that Autism is not a defect or disease that needs to be cured, my kids would be seen differently by society than they are now. I would not be asked things like "are you worried your next child will be Autistic?"if Autism was Accepted. I would not have to fight for adequate support for my son in school if Autism was Accepted. I would not have to worry what kids are doing to my son and saying to him if Autism, and differences in general, were Accepted.

Autistic people are not the only people who have this struggle. Many people with Mental Illnesses experience the same thing. Assumptions are made based a persons diagnosis. For example, a person with Bipolar will be asked "did you skip your meds?" just because they get angry about something. Never mind the fact that their anger might be justified- it made others uncomfortable so it is dismissed as a symptom of  their disability and ignored. How demeaning! How rude!

So, when you come across someone who strikes you as being a bit different, or "quirky", or "individual".... please take time to consider the possibility that they may have already come a great distance to meet you where you are. Think about the distance you are prepared to go to help them feel comfortable in your presence, in your environment. They might already have done more than half the work needed for you to find in them a valuable friend. Are you prepared to put in the effort to really get to know them?

Wednesday, March 13, 2013