Those of us living on the Autistic spectrum, as well as those of us loving someone on the spectrum, are quite aware of autism; so much so that an entire month of "awareness" doesn't seem to fully touch upon the needs of our community. Therefore, during the month of April, AWN will be turning its focus toward Paula Durbin-Westby’s initiative, Autism ACCEPTANCE, an aspect too often missing from the conversation about autism.
AWN has the utmost respect for the very real challenges, and lack of life-affirming resources that many individuals within our community are experiencing. We are committed to supporting all Autistic individuals, with a focus on women and girls, along with their families, friends and loved ones. Though we recognize and respect the challenges many people in our community face, we applaud access, inclusion, and the meaningful services, supports, etc. that our community needs in order to thrive and reach a higher level of sustainability. AWN would like to share in Disability Rights' advocate and activist Justin Dart's famous words and say that we rededicate ourselves to united advocacy, “Lead on! Together we shall overcome!”
I want to talk about Autism Acceptance again. I want to talk about Autism Acceptance because soon we will be, again, referred to as tragedies, burdens, afflictions. This will go on, more than usual, for the whole month of April.
April is the month chosen by non-autistics to raise “awareness” about our existence. But most of the conversation does not include us, autistics, and the outcomes of such conversations do not improve our lives.
Autism “Awareness” Month is a frustrating and sad month for Autistics, because it excludes us, while portraying us in a negative way.
It has become a “war cry” for advocacy organizations. But it has become damaging to us.
There are myths and misconceptions that get talked over and over without our voices to educate the public:
Self-advocacy is not easy. It is true that anyone can self-advocate, even through simple actions like saying “no” to another person, or refusing to follow an imposed activity. And that’s why it can be hard to self-advocate. When we say “no”, when we refuse to do something we don’t want to do, we are said to be non-compliant.
That’s especially true for people like me, a non-speaking autistic who needs a lot of assistance with everything. It is also true for some people who live in group-homes or other facilities, where the schedule made by the staff must not be disrupted, and where individual preferences are ignored. This is ableism.
I am usually a very happy person. I am not happy all the time and my face does not always show the depth of my emotions. Sometimes my body reaction to situations is very similar, even when I experience opposite emotions.
It seems a little complicated but the fact is that I am happy. I can even be happy after a seizure. That is because I am very comfortable being myself, despite all my needs, despite the seizures and despite all the bad things that happened or were said to me.
I am writing this because I am an autistic who does not want to be cured.
I had never before thought about my life and where I am now in these terms: from ableist to self-advocate.
It might seem strange to think that I could have sabotaged myself into saying things that diminished my life and my struggles. But I did. And I believe this is not very uncommon.
From the moment I began to type until I finally let my voice reveal my real thoughts, I typed stereotypes and misconceptions about myself, about autism, about life as an autistic.
I was a child who had just started to type and some people saw that I had intelligence to be explored. But according to pretty much everyone I was “trapped,” “suffering from this terrible impairment” and “isolated from real life” - I “had autism.”
I'm new here and hoping to make some friends. I'm a middle-aged mom on the spectrum and have undergone a complete identity crisis in the wake of my fairly recent diagnosis.
Finding out I was on the spectrum literally turned my life upside down. I lost everything: marriage, family, friends, career, religion...wow, it's been a ride. This much change is hard for anyone, and being on the spectrum hasn't made the journey any easier, I'm guessing. Learning to accept the legitimate me, the me behind all the defensive, social masks I had constructed over a lifetime is ongoing work.
I no longer hide my neurological diversity, but manage myself without judgment, and each day learn what more about what I need. Does any of this sound familiar to any of you? Do we have anything in common? I hope so. Becuase I could use some friends.