April is Autism Awareness month. I've been thinking about what I want to say about this. Seems like I should be grabbing the opportunity of an official awareness month with both hands and doing something amazing.
Some organisations are having a "light it up blue" campaign. There is a motorbike ride fundraiser and picnic on in Sydney.
I thought about doing something special with the kids. But really, it seems so trite to do a special awareness activity when in our house we are aware of autism every day!
Ultimately the goal of an awareness month is to help people who don't know much about Autism understand something about it that they didn't know before. So, I changed my thinking around a bit, and started asking myself what I would like others to be aware of about Autism. I've posted previously about things I'd like people to understand about me as a parent of kids with ASD. I've also posted about the particular characteristics I feel are important to me as a parent of kids with ASD. I have posted about how hard it is to live with Autism sometimes. And I have posted about the "weirdness" that is Autism and how it is something we can embrace and don't need to judge as a negative thing. I thought about going over some of those things again.
But then it hit me. The thing I really want people to understand about Autism is how wonderful it can be, and what positives Autistic people offer to society.
Now, I must acknowledge here that in my family we deal only with what many in the Autism parenting community label as "High Functioning Autism". Both my children on the spectrum are verbal, toilet trained (well, mostly in the case of the 4 year old!), and are learning to live in and integrate with society reasonably well. This is not the case for many families who have children sometimes known as "Severely Autistic" or who have what some call "Classic Autism". For those families the reality often is that their children do not learn to communicate verbally. They may never learn to use the toilet. They may never be able to have a job, or a meaningful friendship or romantic relationship. I have come across some groups of people who do not believe that the struggles I and my family face should be placed in the same category as what they live with. I expect that if they read my blog they might feel a little slighted at my use of the word Autism, and they might find this post, and what I am about to write a bit offensive. It is not my intention to be divisive by acknowledging this, but merely to qualify my thoughts and beliefs by stating clearly that everything I write is from the perspective of someone whose experience is on the "milder" end of the spectrum. My children are indeed "high functioning" and so I work with what we have, and set my goals according to that. I do not mean to diminish from anyone else's experience when I say Autism can be wonderful. I completely understand that having a non-verbal frustrated and sometimes aggressive 14 year old is not wonderful for anyone. I can understand people who experience this desiring some sort of cure or treatment for their child. I would too.
But, as it is, I am incredibly grateful that my experience is not of those things, and that I can see wonderfulness within Autism. I do not want a cure for the Autism my children experience. Life is sometimes (often) tricky as we navigate social interactions, help them learn to deal with changes and the differences between them and others. I find myself wishing the world would be a more tolerant place where "normal" and "same" were not so valued. My Autistic children have characteristics that I wish were more common in this world. They are intelligent and creative, Oh so persistent, honest to a fault (if honesty can be a fault!!), they desire peace and avoid conflict when at all possible, and when not possible they strive for a peaceful resolution, they are not grudge holders.
People on the Autistic Spectrum have intense passion for the things that interest them that when turned into action can actually literally change the world. People like Temple Grandin, who has such passion to see things changed for the better in our world as well as the ability to look at things in a unique way and therefore provide different solutions that have proved to be more effective. In a talk I watched Temple give she points out all the great things that have been invented by people who would these days have been diagnosed on the Autistic Spectrum. She says the world needs all kinds of different minds, and the Autistic mind is one of those! I agree with her wholeheartedly!
For Autism Awareness month, as a way of helping me know what sort of things we need to raise awareness about, I will be asking some questions on my Facebook page. The responses I get to these questions (hopefully I'll get some responses) will form the base for my blog posts during April. I will be putting a positive slant into all of my posts during April Autism Awareness month.
So- go on over and check out the page, and get involved. So that you can start thinking about your answers, here is a sneak peek at the questions:
As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism?
As a parent of a child with ASD, what is the greatest need you have?
As a parent of a child with ASD what is the hardest thing about ASD for you?
As a parent of a child with ASD what is the best thing about ASD for you?
If you could change one thing about the world your ASD child lives in, what would it be?
What is the biggest, wildest, craziest dream you have for your ASD child?
Get thinking!! Your answers needn't be long or eloquent, just honest. I'm looking forward to hearing from you, and to seeing what we can do together to tell the story of Autism in a way that will help people understand it better and realise what a wonderful thing it can be!