I am admittedly frustrated at, to little avail, spending so much effort trying to find understanding about Autism (not just for me, but for all Autistics – diagnosed or not). There is a meme “A bad attitude is like a flat tire. You can’t go anywhere until you change it.” But, well… a difficult environment is like a flat tire in a field of nails. It doesn’t matter if you change the tire unless you also change the environment that it exists within. Being Autistic is like that. People have accused me of having a bad attitude. I struggle sometimes, certainly, but I only wish to struggle less. I wish that perhaps those around me might help me pick up nails, rather than throwing them at me. People who love you should care to make your way easier, rather than criticizing you for finding it rough terrain sometimes. If you have not cared enough to understand what Autism is like, or to try to realize how being Autistic particularly affects me, then you have not helped pick up nails. And worse than not picking them up, but to drop the analogy, you haven’t understood what they are. Don’t just learn about Autism for me, learn about it for the (up to 40% of the) people who are also Autistic, for the many who go undiagnosed, but who struggle with an unknown condition, not even understanding why they struggle. I am fortunate, in a way, that I was diagnosed before I even knew what Autism was, but unfortunate, like so many others, in that I although I understand why I struggle, I don’t understand why I should have to – why I can’t hope for understanding and bits of “nail picking-upping” from those around me. Not a lot, just a bit… Autistic or not, if we each picked up a nail or two from each other’s path, it would be such a better world for everyone.
I don’t know what to do. I honestly don’t know what to do. I have spent six years trying to change me, not to not be Autistic, but just to be the best, most understanding, most patient me I know how to be. It hasn’t always been easy. It hasn’t even always been successful. I’m not a perfect person and I never will be. But I do care and I do try. But the reality is that Autistics, and handicapped in general, need a Rosa Parks, need a Martin Luther King, and I can’t be that. I can’t be that not because I don’t want to be, not because I’m not willing to put in the work, but because I don’t know how. I have had the hardest time just trying to be a voice for myself. How do you advocate for something people don’t understand, that they don’t really see, that they don’t know how to differentiate? How do you advocate for change in an area where people don’t even understand that change is needed? Autistics typically don’t face open bigotry as do many (though granted sometimes they do). But what they face more often is much more subtle, and hard to quantify. It is not, “you have to sit in the back of the bus.” It is more typically, “Ewww, I don’t want to sit by you.” “ I don’t want you in my life.“ “Keep your distance.“ It is, you make me uncomfortable, I don’t understand you, and I’m not going to make the effort to do so. But we don’t understand them either, only we spend our whole lives making that effort. And still, despite that we do, it often doesn’t matter. And I don’t know how to change that. I don’t even know how to change that within my own life, much less within the world at large. I need an ally… more than one, even.
People might think that because I am so open, that means I am very trusting. But that is not actually the case. I am so open because I don’t feel like I have anything to hide, and even if I did I’m not sure I would hide it anyway, because if someone is to like me I want them to like me for all of me. It is Autistic nature to be honest, but from what I understand not typically to be so open. I think in some strange way that my openness is a result of being hurt so much. However trust is another matter. I actually find it hard to trust. Very hard. I give my heart away freely, yet I typically don’t give it with much expectation. There are very few people who it allows itself to believe in. Even then, most times when it has, it has not ended well for me. So if you win even a bit of my trust, it’s a big deal. You can count on the fingers of one hand the souls who have earned it. In fact sometimes I think you can stop with a thumb, and the thumb is a cat.
So, to be honest, one of the hardest aspects of my life is my relationship with God. Arguably it began with my mother’s words that He hated me. But it has been through a lifetime of seemingly unanswered prayer. Prayer that is entirely about love. I keep praying. I keep searching for faith in the midst of the struggles. It is incredibly hard being Autistic. It is even harder being an Autistic person whose biggest goal in life is to form relationships. A skill I don’t have, but that I have worked for, begged for, prayed for. So my mannerisms are not typical. But I want to see my heart accepted by those I love most. I want to see my heart matter more. I want only to feel that I belong in their lives, and that I am valued in every way just as much as their friends who are not Autistic. I am not certain I have ever had that relationship. I don’t believe it is intentional by some, but just a factor of my differences. And I have worked so hard to change that. But for the most part it seems I clearly don’t know how. And that is the biggest source of sadness and frustration in my life.
There were four seemingly disparate topics that I read, and/or that struck me yesterday. But then, as I thought about it, I realized they are not disparate at all. Not to me. Not to an Autistic. They are related, and intertwined.
The four topics, in general, are Autistic Masking, The Ego, Imposter Syndrome, and the (Autistic) relationship with God.
Autistics “mask”. Or so I hear. We are also very literal and very factual. So what does masking mean for an individual who is very literal and factual? I don’t mask, she says. (“She” being me) Or do i? Perhaps everyone does to a degree, but Autistics more so. Only we don’t put on masks to impress anyone, we mask out of fear that if we don’t, we will be ostracized. And that feeling is very real.
If I allowed myself to fully be all of what I am inside – the “overly” enthusiastic, openly affectionate, bouncy thing – I fear that I would be looked at with even more doubting eyes than I already am.
And this is where it fits in with Imposter Syndrome – at the deepest level. Many autistics, myself included, feel impostors not at our job, or at a talent, but just being human. We feel that way because the people around us do. Because most if not all of us are made to feel different from the time we were born. And for somebody who admittedly needs accommodations, being treated differently is a double edged sword. Yes, I understand that I take understanding, that I am asking something of those people around me just to be around me. Yet, as a human, as any human, I want that understanding to be given from a place of love. Not to be given as if I was a burden.
So the Ego, in assessing those reactions to who I am, just searches to be afforded the opportunity to stop being seen as a human imposter in my own skin. Autistics are human, fully human members of society who might take a bit of extra loving, but are willing to return that love in spades…
So where does God fit in all this? It’s just hard not to sometimes wonder why God would create this being – person – so loving, and yet hard to love, at the same time. But my heart wants to think that He did it on purpose, to help show all of us what love is
They say you should never make anybody a priority, for whom you are only an option. But she was never sure if she was even an option. And, yet there were so many priorities. And she cried. And she didn’t understand. And she learned more patience than she ever thought she might know. And the tears were not so much those of sadness, but of frustration. She wondered if there was anything she might ever know, or do. Anything, that might help them see beyond the awkward shell. They used words, nice words… The ones that matter. But she often wondered if they really realized that those words truly described her. And if so why it did not seem to matter. And she wondered if anything would ever change that. And she loved them anyway. And she cried.
It is impossible for me to separate my Autism from the circumstances in which I was raised. I have a fair expectation that Autism shaped part of those circumstances. – though I read of other Autistics who were raised much differently than I, yet feel quite similarly.
When it comes to love, I equate Autistics with those with Down Syndrome, with kittens, and with puppies. I personally take this comparison as a complement. You see, those in this group are innocent, are unjaded by many of the thoughts and attitudes that pervade those who are considered normal. Wanting to love just seems as though it should be simple and natural.
Admittedly, through my lifetime, the thing I have found hardest about being Autistic is not understanding so much of how to interact successfully with the rest of the world. I suppose that is where I somewhat envy others in the above group with me, in that they don’t even recognize that need. They are just happily who they are, and the world can conform to that. Kittens don’t worry about “conforming”, they just love. Yet Autistics recognize that we are out of place, because we are seen as so.
Not everybody wants to be loved by a kitten. But people are far more accepting of a kitten’s clumsily loving behavior, then they are of that of an Autistic human, who “should know better”. Should we, really? Do we need to?
There are things about how “normal people” think that I will never understand, there are those I have come to understand – that I work hard to try to accommodate without fundamentally changing who I am, and admittedly there are those things that I simply don’t agree with. But it is hard, as an adult, to continually work to make those assessments that most, without thinking, learn as children.
Throughout my life, honestly, what I have most wanted to do successfully is just love people. I wish that was so simple as it is for a kitten. I believe it should be. But in the human world it is not. So many of the people through my life who I have just wanted to love have pushed me away. And many have done so quite cruelly. Yet I continue to love. There is nothing else I want to do, except to love more successfully. To me, to love successfully is to love in such a way that those I love are happy that I do. And to find those people who let me love them, in all the ways that are just me (even when all those ways are not “typical”), is just amazing. Gratitude cannot even begin to describe what I feel at finding what should be such a simple thing. To spend a lifetime wanting so much to do something you’re seen as bad at is just disheartening, especially when that something is simply loving people. And that was my story for most of my life. To be able to let my heart be my heart… is just the best thing. The thanks are overwhelming to those I have found who allow me that. My goal in life is to build the understanding that allows that, until we can live in a society which can allow each person to simply work to be the best of who they are, and not be expected to “conform” by being someone they are not.
Mark Twain is quoted to say “never allow someone to be your priority while allowing yourself to be their option.” I don’t know what to feel about that. There have been many people throughout my life who have been priority for me, for whom I am well aware that I’m not even an option. I’m not even on their radar. I think about people every day, for whom I know I am not even an occasional thought. Should I change that? Would I want to? Should I temper what is in my heart to match their reality? Or should I just continue to love who I love with every bit of the zest and enthusiasm as my heart would choose, irrespective of their feelings for, or interest in me? Of course I wish it otherwise. Of course I wish we were not both missing out on sharing my excitement at who they are, at sharing the sparkle in my eyes, or the smiles they bring me when I even think of those people my heart so enjoys. But why would I want to lose that enjoyment, just because they will not give me opportunities to share it with them. That is not a choice I personally can make. I have chosen to allow my heart freedom to love who it loves, and make my head mature enough to deal with consequences that might not be what I might wish.
Enough of “Autism Awareness” already. Awareness only gets us ostracized. We need understanding, full acceptance. We need for the neurotypical public to just accept us as part of the human diversity, not as a separate oddity. I don’t want to be seen as autistic, or different, or difficult. I just want to be seen as Jean, just as every Mary or Peter or Paul. We are all different. I am different, and beautiful, just because I’m me. Not because someone chose to put a label on me.
Alright. Rant not over yet. Even the people who call me friend treat me differently. They possibly don’t even realize they do, but they do. Yet they don’t treat me differently in ways that recognize my needs, or my true “diversity” differences, as one would someone from another religion or culture. They treat me differently as an oddity, as someone who is human, but not quite. Yet somehow also not worth that effort to understand the ways I am in fact fully human, only differently so, only not like them. So as a result they keep me at arm’s length, and think – or hope – or perhaps not care – that I will not notice. But I do. With all the effort I have made in a lifetime to accommodate others, to be accepting of their “non-autistic” yet also very real shortcomings, it only hurts, repeatedly, consistently, always, to not be treated with the same respect and consideration that others are given. Ok. Maybe rant over now. But I love you all. I’m just going to go cry now.
There are so many memes, quotes, and “self-help” books. Some are full of assurances that what they share is the absolute truth, and there is nothing else one can do to be successful aside from what that particular recommendation is. Absolutes… but, in reality, there are very few absolutes in this universe, and I am pretty much certain that even fewer of them are contained in any of these writings. I try to find the truth in everything I think, do, say, and write, but even with the best of intentions, truth is not always as we see it. The point to this is that what we read on Facebook, Twitter, anywhere online, or in even the leading bestsellers are only human attempts at recognizing what that individual, or those individuals believe to be the truth… Though some would lead you to believe that if you are not following their version of the truth that there is something wrong with you, or that you will not reach your goals – but their truth may not be your truth, or the truth as they see it may not work in your particular life. With hopes for love as a foundation, and caring, compassion and kindness making up the things that you do, beyond that, find your own truths. Do not let the words of another sway you, and especially do not let them discourage you, intimidate you or harm you in any way.
It’s a challenge
Wearing a label
That includes you in a group
Of people who are often marginalized
And knowing that the label
Is not entirely unfair, though it is…
Different. How you feel,
How you act, who you are.
A lifetime of convincing yourself
That different can be good.
And that you are.
But being uncertain of how many others
Actually believe that too.
Wondering, in any given moment
Was that response because I’m autistic?
Or was it just them,
Would they have been that way with anyone?
But knowing that it probably was
At least tinged by your label.
Just wishing for those people
Who would show you, that labels
Didn’t really matter to them,
And that you were good
Just for being you.