Learning to be Autistic
That sounds funny, doesn’t it? I hear all the time about people learning to NOT be Autistic (i.e. being forced through therapies to not “behave” autistically). I’ve yet to hear about anyone actually wanting to learn how to be Autistic.
So what does it mean?
Last week my friend Cynthia who blogs over at Musings of an Aspie wrote a great piece, At the Intersection of Gender and Autism – Part I. I read it and found myself nodding in agreement through much of the post, especially at this:
“Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.” – Cynthia Kim
I tweeted Cynthia’s post and got this response from a Twitter follower: “This is brilliant, esp about learning to be autistic. Well written.” At first I wasn’t sure how to take it: “…learning to be Autistic”? Was she being sarcastic? She did add the “Well written” part, so I didn’t think so, but responses on social media can be confusing to me and I’m not always sure how to take them. I thought on it for a bit and I realized what I believe she was trying to say or at least what I came away with, and that was this… We spend our entire lives masking, passing, faking, essentially trying to act neurotypically so that by the time we are diagnosed in our late 30s, early 40s, we have to learn (re-learn) how to be Autistic. In essence…
We have to learn how to be ourselves.
I wanted to hug Cynthia after I read her post and I wanted to hug the woman for her response. Yes! Learning (re-learning)! They’re right! I thought to myself. We have to learn how to be who we truly are, not the person we forced ourselves - or were forced by others - to become so we could pass:
- Hiding our stims
- Forcing ourselves to make eye-contact
- Joining the crowd and enduring parties, sleepovers and other social-gatherings
- Mimicking others so we knew how to “act right”
- Hiding our depression behind a well-practiced smile
- Silently berating ourselves for not fitting in – even if it seemed to others that we did
- Psychologically abusing ourselves for perceived social, familial and relationship failures
- Hiding our Self-Injurious Behavior (SIB) – and oh how easily we hid them
- Eating disorders to try and gain control over some part of our lives because everything else seemed out of control
- Obsessive Compulsive Disorder (OCD)
- Hiding meltdowns whenever possible
I self-diagnosed six years ago at 37 and was professionally diagnosed at 39, two years later. J mentioned to me around that time that I acted more autistic than I used to. He questioned whether or not it was because of the diagnosis itself. The answer sprang to mind immediately…
No, I’m not being more autistic now, I’m just not acting neurotypical any longer.
I stim openly, and I may look away from people while they speak and I will script without worry with my kids. I rarely go to social events but no longer feel that nagging guilt when I decline. I don’t beat myself up for not fitting in everywhere because I’ve found a community where I’m always welcome as I am.
So You’re Okay being “Out There”
I am. And that’s a difficult concept for many to comprehend. Why, if I have been passing for so long, would I want to put myself out there for prejudice and discrimination as a disabled person? Wouldn’t it be better to continue hiding who I really am, at least while I’m out in public? NO. Because any abelist comments I endure from ignorant people merely for being myself can’t compare to the…
…that I endured for years trying to pass. I learned the hard way after several decades that I would rather love me than please others.
Disability Pride… Are You Serious?
Oh, hell yes! Disability pride is another reason I don’t pass, and that decision has been strengthened and supported since day one by finally finding and joining the online disabled community. My kids are growing up knowing that they are autistic, what that means to them as well as to how the majority of society perceives them (quite negatively) and why, which I talked about here and here. Our focus is on their strengths, where they excel, so they can take pride in themselves and their accomplishments.
Do we gloss over the difficulties? Absolutely not, we live those, too, every single day.
So we talk about challenges and areas of difficulty, we don’t ignore them, and we figure out what we can do to either strengthen ourselves in those areas, or how to work around them when we can’t. My children do not feel a need to pass and are learning to advocate and ask for accommodations when they need them – not making the mistake of pretending to have everything under control like I did. They speak of disabilities very openly because it’s a part of who they are. They are being taught the Social Model of Disability and how it’s our environment along with people’s attitudes towards disability that disable us. While there are challenges and obstacles, they are not insurmountable. They do not render us incapable, they make us have to figure out other ways to do things so we can be successful. That’s not being incapable, that’s being adaptable. We will figure out how to make things work because, honestly, we don’t have a choice.
Unlike me when I was growing up, my kids don’t feel the need to hide who they are.
I hope they never do, which is why we keep the conversation going. I’m hoping what they learn in childhood will carry over into adulthood. And that it will continue to strengthen their disability pride, and support their decision to not hide their disabilities.
We have a choice to make… Either we continue to try and pass, and teach our children to do the same, putting them in therapy after therapy so they can “act right,” teaching them by our actions that disability is a bad thing and that we don’t accept them as they are,
And then let them deal with the consequences when they’re older, like many of my friends and I have.
Or we can love them unconditionally, every single bit of them, and teach them about themselves with disability pride: Our children are not broken, they do not need to be fixed. And while we’re at it we must educate them about the wall of societal hate and fear they are up against. That information we cannot keep from them because if they haven’t already encountered it, they will. And it shouldn’t be a story of gloom and doom – don’t scare them! – be honest but allow the conversation to grow and mature as your children do. However you approach it, it’s still a part of the conversation that needs to be addressed so they are able to handle ableism when they encounter it, like my children have.
Life is a work in progress. It’s not easy, we’re not always going to get it right and we’re going to make mistakes again and again. Learning from those mistakes and not making the same ones twice, talking to our kids about successes as well as the things we failed at and why we failed, is a big part of our education and theirs. That is why I am teaching my kids to love themselves as they are, to accept that there are things they will do with ease, and others they’ll not be able to do at all (you know, like every other human being).
When we talk about autism acceptance we usually see passing as a fail.
So Then is Passing Always a Fail?
No, it’s not. Times are changing, acceptance and inclusion, and disability rights as a whole are garnering more attention through major social media outlets. But we’re not “there” yet. I have friends who continue to pass as non-autistic because of incidences of bullying and job discrimination, and I support them in their decision. I get it, do you? Do you understand why some of our fellow Autists choose to pass? It’s not because they have a problem with being Autistic, or they hate who they are. Far from it. It’s because they fear loss of income or abuse for being themselves. For them…
Passing isn’t about embarrassment or shame, it’s about survival.
While advocates continually chink away at the ignorance surrounding disability, we continue to teach our children that there is no reason to act or pretend to be something they’re not. Will they ever have to pass to get or keep a job? I have no idea, but I truly hope not, it’s why we continue to advocate for acceptance. Speaking in a non-survival context, the need to pass generally serves to make non-disabled people feel more comfortable around us, nothing more. What I tell my kids is this: “You are loved and appreciated, and whole just as you are, and when ignorance rears its ugly head, the person making the ableist comment is the one with the problem, not you.”
My hope for my kids is that they never have to re-learn how to be Autistic because they will have always been cool BEING Autistic.