Tag Archives: acceptance

Dragged in two directions, neither of them good

I feel like I’m in the middle of a tug of war, being hauled on by two groups, neither of which actually care about me or what I have to say.

So there’s a topic that has been churning around in my head for a while now. It’s the one where people will say “ah, but really we’re all a little bit autistic” and how horrible it is to say. I’ve really been struggling to give voice to that, why it’s so icky, and eventually I went and asked for help. In the process I learned that I am not the only person who struggles to put it into words.

However, as this has all been churning around, another topic sprang to mind, and that’s the one I’m going to talk about now. Hopefully sometime soon I’ll figure out how exactly to explain that no, we are not all a little bit autistic.

So increasingly I feel like I am being tugged in two different directions, both of them icky. And trying to pull back on either of them risks me falling in the other direction. Or, just as bad, risks people thinking I am going in the other direction, even when I’m not.

See, on the one hand we have the people who talk about autism as a “tragedy.” They’ll use words like “disease” or “holocaust” to describe us. They’ll talk about us as though we’re lost or broken, diminishing our lives and our personhood to nothing more than fear mongering talking points. We’ve all run across it, I’m sure. I’m sure many of us have been hurt by words like that in some way or another. So we resist. We say we aren’t a tragedy. We explain we have strengths. We say we are different, not less. We insist our voices be heard, even as they try their best to silence us.

And people see us resist those tactics, and just wind up thinking we are on the other end of things. The end where people say things like “we’re all a little bit autistic” as though autism is nothing more than a bundle of quirks. This is the side that diminishes our very real struggles, how much things can hurt when you’re autistic, how extremely difficult some things can be.

I’ve had people see that I am against the “cure” idea, and accuse me of being against therapy, treatment, and other sorts of help. I’ve seen people claim that “different, not less” is treating our differences like hair color – something shallow and cosmetic and not actually a major impact on one’s life. At times when I’ve explicitly rejected people saying “we’re all a little autistic” I’ve had people able-splain at me that since it’s a spectrum, everyone is on it.

I’m tired of feeling like I’m the middle of this terrible tug-of-war, but I don’t know how to leave. I don’t know how to make it clear that I’m not on either side – that I see BOTH sides as being harmful. And I know so much of it is because so few people are willing to listen to autistic people. When they do, so many come in with their preconceived notions of what we’re saying, with the straw men that have been constructed by the people in that tug-o-war, that they are more interested in accusing me of saying things I’m not than in actually listening to what I am trying to communicate. It’s frustrating. I don’t know how to fix it.

So I guess for those of you that do listen – thank you. Maybe we’ll find a way out from those two sides and forge our own path.

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Making a point with pictures

The following is a picture-heavy post. All images are either creative commons licensed or mine.

These are facial expressions.

Image is of me in pigtails, with a happy expression on my face.

They are a way that people use their faces to express themselves.

Black and white image of a smiling elderly man. Image by alvbarito on flickr.

They are frequently involuntary – for NTs, at least, facial expressions just seem to happen on their own.

Image is of a man with an expression of pain on his face. Image by chrisjl on flickr.

Even babies have expressions, and they certainly aren’t thinking about exactly how to arrange their face.

Image is of a baby looking mischievous. Image by philscoville on flickr.

We also express ourselves through our bodies.

Image is of me going in for a handshake.

Much of this is also involuntary or unconscious.

Image is of two men – one standing and one sitting. Image by mr_physics on flickr.

We even have a phrase for it. “body language”

Image is of me, looking very tired on a horse.

It’s not considered bad or wrong or something to get rid of.

Image is of a man and woman acting flirtatious towards each other. Image by junkchest on flickr.

This is body language too.

Image is a drawing of a person smiling and flapping their hands.

We shouldn’t treat it any differently from all the rest of the body language out there. Ultimately, it’s really no different.

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Autism Awareness

So there is a lot of talk about how we need to go beyond autism awareness and into autism acceptance and autism respect. I TOTALLY AGREE with all that. So much. Acceptance is super important.

But then I see people spreading all sorts of misinformation and I realized that being aware that there is a thing called autism does not mean being aware of what autism actually is. I see parents talking about their difficult experiences with their autistic children, and then they cite a bunch of things that are not autism. So here is my quick, messy, off-the-cuff post for autism awareness, talking about what autism is and isn’t.

Autism IS a developmental disability. It involves all sorts of things that are difficult and challenging. When I speak of autism acceptance, I want people to accept that we need help and accommodations, and I want people to work towards helping us. Autism is primarily defined by social difficulty – that is the common factor. It can also include clumsiness, developmental delays, executive dysfunction, and other things.

That said, there are many things that autism is NOT. Autism IS NOT anxiety. Autism IS NOT depression. Autism IS NOT epilepsy. When autistic people are abused, it is the fault of the abuser, not the autism. When autistic people are bullied, it is the fault of the bully, not the autism. Yet somehow, over and over and over again, people talk about these Not Autism things when they are trying to explain why autism is bad.

So just to be totally clear, STOP BLAMING AUTISM FOR TOTALLY SEPARATE THINGS.

Now, to look at this more personally, I am autistic. I have fairly serious depression and anxiety. It is true that depression and anxiety often have a higher incidence rate among autistic people. Of course, they also have a higher incidence rate among people who are female, which I also am. It would be utterly and completely absurd to blame “femaleness” for depression and anxiety, or seek a cure for “femaleness” because things like depression, anxiety, abuse, sexual assault, etc all have a higher incident rate among said female persons. Yet somehow, so many people do exactly that when it’s autism. Then they wonder why we say they are demonizing autism. Just to be clear, it’s because they are blaming autism for things that are not autism, and are not the fault of autism.

Finally, I have seen people say we are terrible for trying to focus on the strength of autism. On things like ability to focus, ability to take in large quantities of information and process that information over time, ability to identify patterns, high memory recall, ability to notice details, etc. Yet people try to silence us for speaking of that, insisting the conversation focus only on how broken we are. THEN, of course, they will go on to talk about how we have a low employment rate.

Which is true, we do. Except it seems to me that getting word out that we have strengths and convincing employers that autistic people are worth hiring is a great way to address the employment problem. As such, I can see no sense whatsoever in all these attempts to silence conversation about our strengths. Unless, of course, your goal is to shame autism, spread misinformation about autism, and generally talk about autism as some terrible, horrible thing. Usually bringing up all those things that are Not Autism in the process.

So yeah, let’s have a little more autism awareness. Including awareness of what it is NOT, and awareness of what we can contribute when our difficulties are accommodated.

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I’m not going to fight my own mind

Let’s talk a little about metaphors. Metaphors are pretty cool, and they are pervasive in our society. In fact, neurotypicals have a tendency to not even think about them or sometimes even be aware that they are speaking in metaphors. We are so surrounded and immersed in metaphor it’s like the air – something barely even thought about.

Unless something in the air doesn’t quite fit, or you can’t seem to breathe right. Suddenly the air is very much on your mind (talking about metaphors using a metaphor. yep). When you’re autistic, metaphors don’t flow as smoothly as they do for other people. I know that I tend to be more aware of them than many people around me.

Now, I am here to talk about one particular metaphor. One that is rarely questioned (though it is sometimes, and the questioning is growing) but I think causes many problems. That being – the “battle” or “enemy” metaphor for illness. A friend shared this really great article going over many of the problems with the utterly pervasive battle/fighter/war/enemy metaphor that is used in medicine. Thing is, a metaphor is not simply a word thing, about helping us convey a concept. The metaphors we choose to use actually play a really deep role in how we conceptualize ourselves and the world around us. If you want to read more about that, read the book Metaphors We Live By, by George Lakoff and Mark Johnson.

With illness or disease, we push people to view the illness as an enemy to fight. We say the person who is sick is a fighter, and encourage them to view themselves this way. Medicine, doctors, tests, etc all become weapons in this fight. I think we hope that this metaphor will help people in dealing with their disease, but there is growing evidence that this is actually not helping. From the previously linked article:

“1970, Polish physician Zbigniew Lipowski introduced a framework for characterizing the meaning that patients ascribe to their illnesses. These categories include viewing illness as a challenge, value, enemy, or loss, among others. Since then, studies that have interviewed cancer patients around the time of diagnosis and followed them for years after have found that patients who view their disease as an “enemy” tend to have higher levels of depression and anxiety, and poorer quality of life than those who ascribe a more positive meaning. They also tend to report higher pain scores and lower coping scores.

Which basically means – this metaphor is not working.

However, I also want to look at it a bit in terms of the things I deal with – autism, depression, and anxiety. These are all things to do with my mind. Literally – my brain. They are all happening right here in my head. Now, with autism it is obvious. While some people out there still want to “fight” autism, I find it utterly bizarre. You cannot separate autism and me, so there can be no fighting autism without fighting myself. When you tell a child that autism is an enemy, you are telling them that their own brain is their enemy.

For me, this even extends to depression and anxiety. They’re in my brain. I don’t want to fight my brain. They’re part of the chemicals my body makes. I don’t want to fight my body. If I really, REALLY look at them, in the end if they are my enemy then so is my body. I am not interested in making my body my enemy.

On top of that, for me they are chronic conditions. In the war metaphor the best I can hope for is a stalemate. I will never truly win. What a terrible way to view my life. I don’t want to see myself as fighting a war I can never win.

So I’m not going to.

Not that it will be easy. It is SO easy to view my body as my enemy, my problems as my opponents to defeat. My culture is absolutely saturated in this metaphor and there is no getting away from it. This can only work as a conscious and deliberate choice on my part to reject my culture’s dominant metaphor and replace it with my own. It is a choice to accept myself, with all that it entails. It will be hard. It will take work. I believe it will be worth it.

Therefore, depression and anxiety are challenges. They are part of my mountain to climb. They are problems that I can find a solution for.

Ok, I actually want to look at that last one a little more closely. The book Metaphors We Live By that I mentioned before had something really interesting to say about the phrase “solution to my problems.” It involved a non-native english speaker hearing the phrase, and seeing an elegant metaphor in it. One that we don’t actually use, but I think is much better than the way we currently use the phrase.

What if by “solution” we meant it in the chemistry sense:

  1. the process by which a gas, liquid, or solid is dispersed homogeneously in a gas, liquid, or solid without chemical change.
  2. such a substance, as dissolved sugar or salt in solution.

So, for example, salt water is a solution. In this metaphor, the “solution” to our problems is the substance in which we can dissolve as many of our problems as possible, while precipitating out as few as possible. I want to dissolve my depression, my anxiety, my sensory problems, etc. Some of this is accomplished with medication, some with certain boundaries on what I do and how I do them, some with care of what I eat, and so on and so forth.

With the metaphor, it is presumed that these problems don’t actually go away. They are simply currently dissolved. It means that if something changes (and anything can cause a change), they might precipitate out of the solution, requiring us to tweak it. It does not mean we’ve done something wrong, it does not mean we lost, it does not mean we have to fight another battle. It’s just something that happens and that’s ok. We simply continue the process of finding the best solution at the time – and the best solution will definitely change over time. That’s life. It’s no big deal.

I like this metaphor much better. I may have enemies to fight, but they will not be my own body.

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It’s not a Contradiction

There are two primary ideas that this post is all about.

Both of them are true.

1. I am ok just the way I am. I deserve to like myself and be liked by others. In fact, learning to like myself is one of the projects I am working on.

2. I need help, therapy, meds, support, and accommodation. I am constantly working on self-improvement projects and making myself better than I am.

On the surface, I think these two things can seem contradictory. If I like myself just the way I am, why am I trying to change? If I am ok, why do I need help and support? When I first started thinking about this post, it occurred to me that this apparent contradiction might be behind some of the friction between autistic adults and parents of autistic children. It’s like when I wrote about not wanting a cure, and a parent thought I was saying we should not get help or treatment. I wasn’t saying that at all, but somehow that’s what they heard.

All too often, when autistic adults are trying to push the first point – that we are ok just the way we are – people hear a negation of the second point – that we shouldn’t try to improve ourselves or get therapy or accommodation or help. As an adult on the autism spectrum, this can be INCREDIBLY frustrating. It often feels like my words are not being heard, or are even being deliberately twisted. I want acceptance, and I am accused of claiming I don’t need help.

So I think we need to examine our assumptions. Parents – I’m looking at you here. Neither statement negate the other. In fact, when I think about it, I think they go very well together.

Because I am ok just the way I am, I deserve help, therapy, meds, support, and accommodation. I am ok just the way I am, therefore it is ok to ask for what I need. I like myself, therefore I want to be the most awesome that I can be. Why settle for only kinda awesome when I know I could be EXTREMELY awesome? As a matter of fact, my mentality of working to better myself is exactly one of the things I like about myself. Go me!

Right now it feels like if an autistic advocate wants to promote the first point, they must also address the second point just to avoid being misrepresented by others. I find this really sad and wish it weren’t that way. Sometimes, when that happens, it feels like parents must believe their autistic children are NOT ok they way they are, deserving to like themselves and be liked by others. I often find this very distressing and wonder why it so often seems that we have to choose between one of the other – we’re ok OR we need help, but apparently never ever both.

So I just want to say – yes both. I am ok. I need help. IT’S OK TO NEED HELP. And liking myself is one of the best tools in my arsenal to get the help I need, and continue to improve and learn and develop. I can tell you from experience – it is incredibly difficult to move forward if I do not like myself or think that I deserve to move forward. They absolutely have to go together. And when I say that autism deserves acceptance, and that I am ok just the way I am, I am also saying that the help and accommodation I need are just as ok. We are all interdependent anyway. My interdependence may just look a little different from yours, that’s all.

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It’s that time of year again…

Autism Awareness day/week/month/whatever.

Or is it Autism Acceptance?

Or another word that we think might be better that also starts with A, because apparently alliteration is super important in our catch phrases?

I normally just stay quiet around all this. There’s just too much bickering around what word to use and what organization to support and the parents vs. autistic adults thing seems to get thrown into even sharper relief and I’m just not really sure what we’re trying to accomplish. I guess asking for a consensus is a bit much, but mostly I just try to duck under something safe and stay away.

Thing is, though, I’m not actually against the idea in principal. As absurd as it seems, I actually recently learned that there are still people out there in the western world who have never heard of Asperger’s Syndrome. Even if we’re only working for awareness in North America and Eastern Europe, which is a pretty narrow focus right there, we’re not actually done.

Though then I wonder why autism is so special that it gets the awareness month when there are so many other, debilitating yet almost entirely unknown health issues out there that have people struggling for awareness in a very real way. Sometimes it feels like, as a society, we’ve really focused on autism, but it’s also possible that I have some confirmation bias here, since I rather surround myself with autism-related things. I also sometimes worry that we’re lumping ALL developmental delays or disabilities in with autism, and I’m not sure that’s a fantastic thing to be doing.

Point is, I always get weird mixed feelings this time of year. I’m not sure if I want to try to bring some poignant, heartfelt words to the table only to see them lost among all the other poignant, heartfelt words and the bickering and the “I’m always aware!” and everything else that happens, or if I just want to avoid it all.

So as I do, I’m writing about those mixed feelings. This is what I bring to the table – myself, my ambivalence, my thoughts, and my words. I do have a metaphorical horse in this metaphorical race, so maybe staying out of it entirely isn’t quite the right answer for me. So instead I participate in the odd, not-entirely-in-it way that I do.

Jumping a bit, this month also gets me thinking about autism tattoos. I do have tattoos and sometimes I think about getting an autism tattoo. Except I intensely dislike the whole puzzle thing and I refuse to get a tattoo that uses it. Which leaves me wondering – what else is there?

No really, do you know anything? Because I sure don’t.

Anyway. I rather doubt I’m going to be acknowledging autism awareness/acceptance/other word that starts with A month beyond this post. When it gets really loud I lose my ability to make my voice heard, and in the autism world this month sure is loud. Loud and messy and not very friendly to my brain. Which I guess is not that surprising, in a disjoint “community” that seems to bicker as much as it does anything else. Maybe someday, when we’ve managed to mend some of these rifts, it will be different.

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You don’t get me

Ok, so I’m planning on making two main points here, which can be summed up, very roughly as follows:

1. You don’t get me.

2. You don’t need to get me.

Now, number 1 is a very broad generalization that isn’t actually entirely true. Lots of people have various forms of shared experiences and can, to a degree, understand each other, or at least certain aspects of each other. Maybe you are also on the autism spectrum, maybe you are also an adult, maybe you also have a non-standard experience of gender. The more things we have in common, the greater an understanding of each other we can have.

However, our understanding will never be complete. There will always be things about other people that we just don’t get. Things that are confusing, that don’t make sense to us, things that seem like they *should* be another way.

I’m an introvert. Introverts (at least, particularly strong introverts) make up around 25% of the population. The other 75% of the population is made up of extroverts and ambiverts. Point being, introverts are in the minority. As an introvert, I’ve had a few experiences with extroverts that all went roughly the same way.

extrovert: You should like socializing in groups.

me: well, I don’t. I like socializing one-on-one.

extrovert: no, that makes no sense because Reasons. Just try it, you’ll see.

me: I have tried it, many times. I’m not like you, and I find it much easier to socialize one on one.

extrovert: I don’t get it, therefore I don’t accept it. You must be wrong.

Seriously, that is not cool. Don’t do that, by the way. As an introvert (a really strong introvert) I find extroversion baffling. I don’t get it. Getting energy from people? Enjoying socializing in groups? This makes no sense. If I were to assume my own experiences were universal, I would conclude that extroverts are all fooling themselves.

Of course, they’re not. I know this. Because I don’t actually have to get it. I’ll never get it, it will never make sense to me, but that doesn’t mean that I can’t accept it. There are people out there, lots of people out there, who honestly enjoy group socialization. Who find it easy and relaxing. There are people out there who like, even prefer, spontaneity in their social life. There are people who don’t need routines, or who experiences routines as ruts.

I don’t get any of that. But I accept it. Sadly, sometimes it seems like people aren’t offering very much acceptance in return. Not only that, but all too often I see people say “I don’t get it” as just another way of saying “I don’t accept it, you must be wrong.” That’s not cool at all. You don’t need to get it in order to accept it. In fact, I’d go so far as to say that even if you can get it, you’re better off accepting first, and then getting to the understanding bit. Because in the end, acceptance is more important.

I also think the phrase “I understand” is overused. People seem to think saying “I understand” is a good way to show compassion. Maybe I’m strange, but I don’t find this to be the case. I mean, it can be nice if it’s coming from a person who really does understand. However, if you have no experience with anxiety or depression or being on the autism spectrum or whatever else, then you clearly do *not* understand if I am having difficulty in one of those areas. Personally, I’d rather not be lied to. Also, I don’t need you to understand. I need you to accept that what I am saying is true, even if it doesn’t make sense to you. I need you to tell me that you care and you’re here for me, even if you don’t really get it. That, in my book, is compassion. Certainly not faking an understanding that you don’t have.

Most people are not like me. Being a woman on the autism spectrum, I am in a minority. Most people are not going to understand how I experience the world, and that’s ok. All I ask for is acceptance. I want to be heard and believed.

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