I Am Lucky To Be Autistic. You Shouldn’t Have To Be.

Three years ago I knew almost nothing about autism. I didn’t know what sensory sensitivities were, what a meltdown was, or why a weighted blanket might be someone’s lifeline. I had been diagnosed with depression, anxiety, anorexia, and subclinical borderline personality disorder. I had been in therapy for almost seven years, including two intensive programs, multiple groups, individual therapy, and family therapy.

Three years ago I would have laughed if you told me I was autistic. No therapist had ever suggested the diagnosis to me. I’m highly emotional, not analytical. I’m overly sensitive, not someone with flat affect. I’m highly successful in school, I don’t struggle at all.

Here I am three years later with an autism diagnosis that makes sense of my life in a way that no prior diagnosis ever has. And I have to be honest; it was luck and privilege that got me this diagnosis. Not only that, it was luck and privilege combined with my own determination, curiosity, and NEED to understand myself that got me the diagnosis.

That is entirely unacceptable.

If you want to read the rest of this post, head over to the new site, Aut of Spoons.

 

Announcing Aut of Spoons

For the last four years I have been blogging here at We Got So Far to Go. In that time, I’ve grown as a writer, my interests have changed, and my focus has shifted. In light of all of that, I’ve decided it’s time to move on to something that’s a little more fresh.

Don’t worry! I will still be blogging. I’m SO excited to be announcing the launch of Aut of Spoons, the new site of my blogging life. We Got So Far to Go will be remaining up and available at least through the end of 2017, but all new content will be appearing at Aut of Spoons, with a fresh new look, an easier URL (autofspoons.com), and a renewed focus on mental health, disability, autism, and neurodiversity. Check it out!

As part of this move, I have also decided that I’m going to be spending more time focused on this blog not just as a way to explore my own thoughts and beliefs, but as a more serious writing enterprise. With that in mind, I am launching a Patreon through which you can support my writing. There are all kinds of incentives to give you a little extra push to donate, but honestly the reason you should donate is because you’re here, consuming work that I’m producing, and you find it worthwhile. With your support I can create more and better content, pay my hosting fees, and maybe even give you some b-b-b-bonus content! I’d love it if you checked it out.

Thanks for being a part of We Got So Far To Go. Now let’s keep on going at Aut of Spoons.

 

The Real Violence of Mental Illness

One year ago Niki died. You may not know Niki. I wish you had. She was loud, smart, thoughtful, funny, and very, very ill.

She was physically ill and mentally ill. She was the kind of mentally ill that makes people look away, or say “Oh, THAT kind?” She was the kind of mentally ill that people sweep under the rug. She was the kind of mentally ill that doesn’t get services and doesn’t get PSAs and doesn’t get sympathy. She was the kind of mentally ill that makes service providers label you “resistant to treatment” or even avoid giving you a diagnosis because there’s too much stigma.

She was the kind of mentally ill that people bring up after shootings. In fact she was the kind of mentally ill that people are starting to talk about right now, after this very shooting, to explain how someone could be so violent.

And one year ago Niki died.

Niki died because she was the kind of ill that doesn’t get noticed, that doesn’t get services, that doesn’t get support. She died because she could not access disability services. She died because no one wanted to recognize that the people most likely to be hurt by someone who is mentally ill is the person themself.

All of you want to talk about mental illness. Let’s talk about the real violence that is associated with mental illness. Let’s talk about how this society is saturated with ableist cruelty that enacts violence, pain, and suffering on the mentally ill every day and ends in deaths like Niki’s every day.

I see you all talking about how we need better mental health care now that your comfortable neurotypical lives have been disrupted. I see your silence when people die of suicide. I see the way you blame us. I see your silence when funding for our services is on the table, and I see your silence when we want to talk openly about our lives and our struggles. I see you calling us dramatic, mocking us for asking for trigger warnings, ignoring our calls for help and support. I see you ignoring mental health parity in health care legislation.

And I SEE YOU only bringing up mental health care now. Now, when you can blame us. Now, when you need a way to understand violence that says “it’s over there. it doesn’t belong to me. It’s people like them. I am not responsible”

You want to say that it’s people like Niki. People like me. People with personality disorders, or “severe mental illness.” We are the violent ones.

Well guess the fuck what? You have done so much violence to us. How dare you, how fucking dare you point your finger at one of the most vulnerable communities when there is no evidence to suggest that mass shootings are more likely to be perpetrated by the mentally ill? How fucking dare you continue the stigma that literally kills people like Niki, and go on to say that we are the violent ones?

I know that there will be some of you out there saying “wait, but I support mental healthcare!” Fucking great. What are you doing about it? What are you doing about it all of the days that our media is not exploding with news of a mass shooting? Are you calling and writing your legislator? Are you openly talking about mental illness, therapy, and services to break down the stigma? Are you talking about the fact that people with mental illness are more likely to be victims of violence than perpetrators, and looking for solutions?

Are you protecting people like Niki? Are you actively fighting the violence that happens to mentally ill people each and every day?

Or do you only care when it’s people like you, “normal” people, neurotypical people, the ones that you deem worth it?

I see you, and I have no more patience.

I Don’t Care if Our Attention Spans Are Shorter

The other day I heard a statistic that caused the people around me to gasp in horror: people now have attention spans shorter than a goldfish, only 6 seconds. Shock! Amazement! Terror! Technology will destroy us and we won’t be able to have meaningful lives or relationships anymore and we’ll never learn things or grow as people because we can’t focus for more than 6 seconds.

Fun fact, it took me more than 6 seconds to write that paragraph, uninterrupted. All I did was write that paragraph, for more than 6 seconds. I wonder if attention span science isn’t as great as it’s cracked up to be? Or perhaps our attention spans change based on context. Huh.

But if I’m honest, I actually don’t give a rat’s ass if our attention spans have grown shorter. We’ve been hearing this same kind of complaint about new technologies for literally thousands of years. Our dear pal Socrates was opposed to writing because “[Writing] will create forgetfulness in the learners’ souls, because they will not use their memories; they will trust to the external written characters and not remember of themselves. The specific which you have discovered is an aid not to memory, but to reminiscence, and you give your disciples not truth, but only the semblance of truth; they will be hearers of many things and will have learned nothing; they will appear to be omniscient and will generally know nothing; they will be tiresome company, having the show of wisdom without the reality.” (From the Phaedrus).

People have complained about technologies ranging from the printing press, to the telephone, to television and beyond, convinced that each of these technological improvements will make us less intelligent, or maybe just destroy society. Amazingly, here we all still are, capable of functioning, making new discoveries, improving technology even further, and maybe still remotely intelligent.

Because here’s the deal: our minds change in reaction to the world around us. We are adaptable and flexible beings. We change to fit the environment that we live in. Perhaps we do have worse memories than the ancient Greeks did. But you know what? I don’t care. There is nothing inherently better about being able to remember more things. The world that we have today is one in which we don’t need to remember things as much as we used to. It’s incredibly rare that we won’t be around a computer, phone, or other device that allows us to look things up. Being able to remember vast stores of information is no longer actually very helpful.

Instead, what is helpful is being able to sort through huge amounts of information, cope in a setting where there are many competing distractions, and suss out what is important or useful or true at any given point. No one seems to be asking whether the changes that are happening in human brains (if they are in fact happening) are USEFUL. Are we losing memory to make space for quick shifts in focus that allow us to notice the hundreds of distractions but still move back to what we were doing before? Are our brains beginning to pick up more of an ability to focus on multiple things at once? Why do we always assume change is bad?

Nowhere are we taking the time to ask what we get out of the change. Amazingly, things like this tend to happen for a reason other than “kids these days.”

I can’t help but feel as if all this worry about shorter attention spans and bad memories is just more angry old men yelling at clouds. I have yet to see any criticisms of these changes in the human brain that actually tell me WHY it’s bad for our brains to change in these ways. They all assume that we’re already on board, that we all want really long, focused attention spans or great memories. And it seems like the reason that they assume we’re already on board is because those are things we’ve prized in the past so they must be good now, even though the world is different now, our needs and abilities are different now, work is different now. Different is not less, even if we couch the difference in terms of deficits.

So no, I don’t care if our attention spans are shorter. I care if we are functional in the world we’ve got. And overall we seem to be doing pretty well.

Racism Is NOT A Mental Illness and It’s Damaging To Say It Is

 

Fuck this this is shit in all the ways it is shit.

Ok, now that I’ve got that out of my system I still make no promises that I will not continue to call it shit over and over again. Because this is a steaming pile of garbage filth feces, and I am not about to censor myself on the way that mental illness gets thrown under the bus time and again to make other people feel good, safe, and normal. The lives of the mentally ill are always seen as less than, wrong, and bad. This kind of bullshit is why even liberals are willing to discriminate against disabled and mentally ill people. I apologize in advance if this is ranty and angry but it has every right to be because this video is senseless drivel, but it’s exactly the kind of senseless drivel that I see coming out of the mouths of people I expect better of.

DEFINITIONS

Let’s start with facts. The video posits that racism is a PTSD like mental health problem because racists exhibit irritability, aggression, and hostility. Let’s talk about what it takes for something to be a diagnosis in the DSM, and why we have diagnoses. First and foremost we have diagnoses so that people can receive treatment. A diagnosis is supposed to help providers understand how they can help someone. Now right off the bat, this video’s suggestion that racism is a mental health problem or that we should treat it as a mental health problem makes very little sense because hey guess what it turns out a. almost everyone has some racist tendencies and b. racists respond to different types of treatment. Some people just need to meet a black person they like, some people need to confront their own traumas and history, some people appear not to be open to any kind of change. There’s no one reason that people are racist or a best practice for interacting with them. These traits vary wildly among racists, and there doesn’t seem to be a higher rate or intensity of them in racists than in the general population (or even associated with instances of racism. People can be racist with a smile on their faces while thinking they’re being kind). So strike one on why we should approach it like a mental health issue.

“Irritability, aggression, hostility,” those are not enough to make up a mental health diagnosis, and NOT EVERY RACIST shows those traits. They would have to be exaggerated beyond all the rest of the population, impact a person’s day to day functioning, and be unique to racists in some way in order to quality as a mental health diagnosis

The other major problem with suggesting that racism is a mental health issue is that in order to be considered a diagnosis, the symptoms have to impair functioning in some major area of life (work, relationships, education, etc.). Now there are some extreme cases in which this happens, but overall racists are pretty functional in our society. In fact, it turns out that you can be openly, disgustingly racist and still get elected president. Our society is one embedded in racism, so the idea that being racist or doing racist things or having racist thoughts will make it hard for you to function is laughable. This is what we’ve been taught all our lives. It only makes sense. In my experience, actively fighting racism is far less functional in our society than accepting the basic racist premises that we grow up with.

There are some other smaller problems, like the fact that not all racist people show irritability, aggression, or hostility (have you seen a sweet racist Minnesotan mom? I have), so if those are supposedly the defining characteristics of “racism”, why aren’t they associated with all instances of racism?

WHY DO PEOPLE DO IT

So factually it doesn’t make tons of sense to assert that racism is a mental health issue because the traits are not out of line with the rest of the population, seen in all racist instances, and don’t impair day to day functioning. What could be motivating this impulse that so many (mostly white) people have to say that racism is a mental illness? What are the larger impacts of this assertion?

The video seems to assert that this label helps us address racism better, because we can use “exposure therapy” a la the therapy for phobias. I personally think it’s a REALLY BAD IDEA to suggest that. First, there’s already a lot of gross misunderstandings about how therapy works, and how exposure therapy in particular works, to the extent that random people will just expose someone to their triggers and call it therapy. Saying that on a society wide level we can engage in exposure therapy by protesting and talking about our past traumas propagates these misunderstandings and suggests that any rando can do therapy. Additionally I don’t see why we need to label racism a mental health problem in order to be willing to talk about it openly and face it head on. We can do that anyway.

The video also seems to suggest that viewing racism as a mental health problem will push people to be more accountable. It says “don’t let your racist friend or uncle off the hook. You wouldn’t abandon them if they had a mental illness.” Now I have to laugh at this because mentally ill people get abandoned all the fucking time so that’s a fucking shitty appeal to people’s decency. But this also implies that people are racist through no fault of their own and we should address racism to help the poor innocent racists. WHAT. THE. FUCK.

STOP CENTERING WHITE PEOPLE DEAR LORD JESUS. The reason not to let racists off the hook is because they are actively hurting people of color. If that’s not a good enough reason for you, then you might be a racist. That’s it. We don’t need to save racists, they’re doing perfectly fucking fine. The more we cater to their fee fees, the worse off we’ll be.

Racism doesn’t HAPPEN to white people. White people CAUSE racism because it benefits us. The end.

SPLASH DAMAGE

Ok ok, so beyond being wrong, what’s so bad about saying that racism is a mental illness? Maybe it can help us understand the phenomenon better or give us ways to approach and change the problem, even if it’s not wholly accurate.

Well in addition to not actually being super helpful, calling racism a mental health problem is seriously hurting a whole lot of people. You know, those people who are ACTUALLY mentally ill. If you label things you disagree with or find offensive “crazy” or “mental illness”, you are part of the stigmatization of mental illness. You’re part of ableism.

Cruelty and dehumanization are not the same as mental illness. People with every diagnosis out there are capable of fighting racism and being good people. When you say that something you find immoral is a mental illness, you are implying that mental illness means violence, means treating people poorly, mean violence, means anger, means hostility. Sure, there are people who are mentally ill who do all these things, but this is the kind of rhetoric that suggests every school shooter has autism or every murderer was just crazy. It takes away people’s responsibility (the video gets it completely wrong on that front. Racism is not a behavior like drunk driving, it’s a belief system and it’s one for which you are responsible), while also opening up the door to mistreat mentally ill people because they are violent and dangerous.

Stop blaming bad actions on mental illness. I don’t appreciate being thrown under the bus so that you can feel like you understand your shitty friends better. It’s complete shit to equate these learned, chosen behaviors with the different way my brain was born.

tldr: it’s not crazy to be racist in our society. It’s not a fluke that so many people in positions of power are racist, it’s part of the system. Calling it crazy only hurts the mentally ill. STOP IT.

 

Categories Are Not Always Negative

So I’m noticing that a lot of people are seeing categorizing as inherently bad because it either a. oversimplifies reality or b. means that you treat people in a category differently. I disagree with both of these criticisms, both on the level that I don’t think they’re always true, and on the level that I don’t think either of them is always negative. There are of course circumstances where labeling things and people is not the most appropriate or helpful thing to do, but there are ABSOLUTELY times that it makes communication and understanding easier. Let’s talk about that.

In both of these cases I want to look at mental illness/neurodiversity/different brains as an example.

Let’s start with the first issue, oversimplification. Are labels an oversimplification? In some ways, all categories must necessarily be an oversimplification. Of course in some ways all individual words are an oversimplification. What a useful label is, is taking a complex idea and shorthanding, giving it a one word name that allows us to refer back to the larger, more complex idea. Let’s take the label “anorexic” as an example. My lived experience of anorexia is far more complex than the word “anorexic” can communicate, but if I tell a stranger “I was anorexic for 5 years,” I have communicated a fairly complex idea to them relatively quickly. I don’t have to explain all the individuals symptoms of anorexia, or the fact that it was a mental illness. I can sum it all up with one tidy word.

Yes, it is possible that you don’t have a good understanding of what anorexia is. Maybe you assume that all people with anorexia are teenage girls, or you really don’t know what anorexia is. That can be a problem and lead to misunderstandings, and when we have a lot of people who are not educated about a particular label, it becomes less and less helpful to use that label. There is some push and pull between brevity and explanation, and in any given conversation it’s good to weigh whether you’d rather explain more to ensure you’re truly understood or be more brief and risk misunderstanding.

Additionally, most words run the risk of misunderstanding. “Smart” is not a label in the traditional sense, but many people have differing understandings of the word smart. It is a natural quirk of language that we don’t all hold the exact same definition of a given word, and to ensure clarity we may need to double check with people. It still seems to me to be easier and faster to use a label like “anorexic” and then check in about specifics rather than starting from the ground up and educating where necessary. It’s useful to have a word that summarizes a complex idea.

As to whether labels push people to treat others differently, I’m going to question that primarily on the basis that sometimes the point of a label IS to receive different treatment. Also we should note that some labels don’t result in people treating others differently, like blue eyed vs. green eyed. Labels don’t ALWAYS change our behavior. But sometimes they do, and let’s talk about that.

In this case let’s take autism. I’m autistic. Many people think that it shows kindness and respect to look someone else in the eye, give them a hug when they’re feeling down, invite them to a party if they’re friends etc. Those are things that make me incredibly uncomfortable, and if I can communicate “please respect my lack of eye contact, please give me more physical space, please don’t take me places that are loud and overstimulating” by telling you that I’m autistic that’s fucking fantastic for me. I WANT people to treat me differently because I have different needs. Many people do. Sometimes labels are important because they help us understand what someone prefers or needs to get by in life (see: introvert/extrovert divide and why we’re so into telling people if introverts or extroverts). It’s why I prefer “Treat others the way they would like to be treated” over “treat others the way you would like to be treated.”

Sometimes that “summing up” usage of a label makes it easier to understand a person’s needs or wants. It turns out that it’s why we use labels in the first place (not just on people either. If something is labelled “hot” we understand more clearly how to behave around it). Yes, it is possible to go overboard on this one. Not every autistic person is the same. You shouldn’t treat all autistic people exactly like each other. We’re all individuals. But until you get to know me, having a particular label can help you get a handle on likely behaviors that will be good for me.

 

Essentially labels cannot be the ONLY way that we understand people, but that doesn’t mean that they’re NEVER helpful to understanding people, and I think that many people who resist labels ignore the fact that without them it’s harder to communicate, harder to find like minded people, and harder to understand yourself.

Tell Your Therapist They’re Wrong

This article is giving me life today, and not just because gratitudes lists make me throw up in my mouth every time I think about them.

It also is giving me life because it reminds me that sometimes mental health professionals are just wrong. Wrongwrongwrong. And it reminds me that it’s rare for us to teach people who are receiving mental health services how to advocate for themselves or determine if their therapist is wrong.

Now before anyone gets huffy, the usual disclaimers: I am PRO mental health professionals. I know these folks work their butts off, and that they can and do save lives. I know that we should encourage folks to see mental health professionals, and to reduce the stigma attached to seeking treatment. Yes to all of that.

But all of that being said, mental health professionals are human. And humans don’t really understand brains all that well just yet. Brains are widely varied, and every technique that we have for treating mental illness will only work on some people. Beyond that, mental health professionals work with hundreds if not thousands of people over the course of their career. Unless you’ve been with them for a hecking long time, you are going to have a MUCH better understanding of your personal quirks and preferences than they are. Sometimes they’re just tired or distracted, or they forget your personal preferences.

Which is all to say that sometimes mental health professionals make mistakes. Or they make a good suggestion but it turns out it doesn’t work for you. Sometimes you need to tell your therapist “No. That doesn’t work for me.” It can be completely mind blowing the first time you realize it’s ok to say no to your therapist sometimes. It’s empowering to realize that you are an individual and sometimes the struggle you’re facing (especially if your mental illness is proving especially difficult to shake) might not be because there’s something inherently wrong with you, it might be because the techniques that have been suggested aren’t right for you. I just want to remind people who are struggling or feeling like therapy isn’t working; you can tell your therapist. You can ask for something different. You deserve strategies that will work for you.

Of course it’s also incredibly hard to say no to your therapist.

The first reason it’s hard is because sometimes things feel uncomfortable or difficult or like they’re not working because growth and change are hard, slow, and difficult. There are times you may WANT to tell your therapist “nope, I’m not going to do that, I don’t like it,” but once you try the suggestion it ends up being helpful. It’s really challenging to suss out when you just don’t WANT to do something, versus when you’re really on target that it won’t be helpful or that it will be actively discouraging and a waste of time or energy.

Part of the work of therapy is tuning up your inner compass so that you can trust it to send you in the right direction. I know after many years of hearing mantras and positive thinking slogans in therapy, that those just make me angry. I’ve tried it, it wasn’t effective. I’ve learned to trust that when people suggest something that sounds saccharine or something that ignores how hard life actually is, it will not be for me. On the other hand, I was very skeptical of mindfulness when I first heard about it, but when it was presented to me in a scientific way it made a lot more sense and has been quite helpful. I’ve become more open to things that have mixed evidence for them.

A big part of doing this is simply trying a lot of different stuff and seeing what works. But once you’ve done that, you start to have evidence of what is effective for you and what isn’t, and you can start to trust your instincts about what types of treatment you want to put your time, energy, and money into.

Which means that you can start advocating for yourself.

Here’s where I want to get practical, and it’s the second element of why saying no to your therapist is hard. It’s because self advocacy is a skill. There are absolutely things that everyone can do to advocate for themselves in therapy from the very beginning, but there are also skills you need to practice and things to learn about yourself before you’ll be really effective.

Telling your therapist that they’re wrong is one of the more challenging pieces of self advocacy, because it can often feel like the therapist has the power in any given situation, or like you need to respect their position. It can be helpful to remember that you are paying them for a service, and beyond that that BOTH parties are integral for the success of that service. The trust you feel for your therapist is one of the highest predictors of success in therapy, and if you can’t let them know you disagree, that trust is breaking down somehow.

But there are things you can do to make it a little bit easier. There are lots of ways to advocate for yourself in therapy, and I may touch on those in future posts, but for now I’m going to focus on speaking up when you think something isn’t working or you disagree with your therapist.

A good way to start is by simply disagreeing about small things. I don’t mean be argumentative, but if your therapist says something that you normally might have let slide, practice just saying “I don’t agree with that, but here’s what I think.” I’ve started to do this a lot in therapy, and I find that it’s far more productive than trying to argue with the therapist. It actually has made me feel a lot more comfortable when I say that and the session goes on without any kind of major repercussions. Those smaller, less important disagreements are a way to practice and to teach yourself that the world won’t end if you tell your therapist no, or let them know something isn’t working for you.

Another helpful thing to do if you’re worried that the strategies you’re getting aren’t helpful is to gather some data. I like to track things, which is why I use a daily mood tracker, a sleep tracker, a habit tracker…I like data. But it can be really helpful to note your mood or a target behavior before your therapist suggests something (e.g. a gratitude log), and then note if your mood improves or your self harm decreases over time after you’ve started using the technique. If not, you can bring that in to the therapist and say “hey, this isn’t working for me.” Having hard numbers to back you up can feel a lot more empowering than just a vague “I don’t feel better.”

Sometimes I like to try to think like a therapist to be a good self advocate. In that, I mean setting goals for myself, thinking of the steps that I can try to reach those goals, and checking in periodically to see if I’m making progress. Most therapists are required to have a treatment plan, but not all therapists share that with their clients. If my therapist is suggesting a new technique or skill, I want to know what it’s supposed to accomplish, what goal it’s bringing me closer to. You can ask to see your treatment plan, or just ask what the outcome is supposed to be for a given technique. That helps you evaluate if it’s working.

All of these are concrete actions, but for me the biggest shift was one in mindset, and it’s a mindset that the article I started with shows off well. Therapy isn’t about doing what’s “right”. It’s about doing what works for you. There are thousands of different therapeutic techniques, skills, and practices. If one doesn’t make you feel better, then STOP DOING IT. Tell your therapist. You deserve something that helps. Realizing that therapy wasn’t a class I needed to ace, but rather a service FOR ME was revolutionary. If it’s not working for you, you’re not broken. It is.