Some Problems With ABA And The Way We Talk About Autistics

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Disclaimer: a content warning for nonconsensual treatment. This post represents my views alone and not those of my employer. I am not autistic, but as someone working for an autism organization I am striving to listen to their voices.

As part of working in the autism world, I’ve been spending time reading and learning about various therapies used to treat autism. There is quite a bit of controversy in the autism world about just about everything, but one of the most controversial therapies is called Applied Behavioral Therapy. It is an evidence based therapy that is considered the gold standard by many treatment providers. It is also considered abusive by many people who actually are autistic.

After spending a class delving in depth into ABA, I understand many of the criticisms that autistics bring to the table, and I want to signal boost some of the problems that I saw in the class, things that apply to many of the ways we talk and think about autistics in general, and things that seem as if they could easily be remedied in order to access the positive elements of ABA (because there are some elements of the therapy that rest on solid and respectful principles).

Let’s start with that. The underlying principles of ABA as they have been explained to me rest on the idea that every behavior has a function, and if you believe that a behavior is not helpful to someone, you have to give them another way to fulfill that same function. This seems like a really good principle. If someone is engaging in self injurious behavior, or their life is being impacted by their behavior negatively (they can’t socialize but they’d like to, they can’t get out of the house, they’re having a hard time getting a job and would like one), it makes sense to help them change that behavior. But it’s also incredibly important to make sure the person isn’t left without their coping mechanisms entirely and has support to fulfill their emotional, physical, and social needs.

Unfortunately that principle appears to get lost really often.

What also gets lost is that any time someone is being treated for anything they need to be an active part of their treatment. Whether they are verbal or not, “high functioning” or not, they need to have some way to communicate their consent and acceptance of the treatment. I actually heard an ABA practitioner say that you might be working with people who “aren’t capable of consenting.” I don’t think it’s possible for me to state NO to this sentiment strongly enough. Consent is not something that is exclusively verbal. It happens in all kinds of ways. It is very, very obvious when non verbal folks don’t consent to treatment, and if you think you’re allowed to continue a treatment after your client has had a meltdown, started crying, started screaming, tried to run away, or tried to hurt you, then you clearly have no respect for the way that your client is withdrawing consent.

What really frustrates me about ABA is that it doesn’t seem to consider the person whose behavior is being modified an equal and active participant, nor does it recognize that they are the expert on their mind and life. It doesn’t take advantage of their knowledge base and attempts to bypass that really important source of information in the process.

In one class that I was in, the presenter spent three hours discussing ABA and behaviors, and only at the end of the session did they mention you could ask someone what they were trying to communicate with their behavior or what they might want to do. One story they told included the fact that they had never just simply asked their client to change the behavior, and instead had tried to motivate the person in all sorts of behavioral ways without making it clear to the person what they wanted and why.

Even when we are talking about behaviors, we have to remember that a part of human behavior is communication. Sometimes that is verbal and sometimes it comes in the form of behavior, but we can communicate with other human beings. Writing off the importance of that communication for helping us understand the behaviors of autistics is a way to continue othering people who are neurodivergent, and for us to ignore what they want and need.

This leads me into the next point: people with autism are people. Just like any other person, they will have preferences. Sometimes there isn’t any deep, important, mental illness scarred reason for liking one way over another. If you get preferences so do they. That means when they tell you “I don’t like this,” you respect their preferences. Unless there is a serious reason that their preference needs to be overruled (e.g. they will only ever eat pizza and it is causing a serious health concern), then there’s no reason to ignore their preferences. Don’t tell me you can’t tell if they’re communicating preferences to you. You know what non verbal communication looks like. You can figure it out. People with autism communicate and it’s not something to be ignored.

What really gets my goat about the way neurotypicals talk about people with autism is that they act as if someone with autism would never have preferences about their treatment, or about the things they find helpful or not helpful. There always has to be some underlying REASON, like “I’m not a visual thinker” or “I had a bad experience with it,” instead of it simply not resonating. One example that I heard of this was when someone asked why one person might not like the 5 point scale, or why it might not work for them when it worked for someone else. The instructor’s response was that they might have had a bad experience with it in the past.

Think about that. If two people are taught the same skill in school and one of them finds it helpful and the other doesn’t, do we assume that it’s because one of them had a bad history with it? No. We probably assume that people are different and sometimes one method of learning is helpful to one person but not helpful to another person. It doesn’t mean there’s something wrong with the method or with the person, just that they don’t mesh.

People with autism get preferences. Most especially they get preferences when it comes to their treatment. It is really hard for me to fathom how a treatment system that rests on the concept of reinforcing positive behaviors does not focus at all on communicating with the individual to understand their preferences, desires, and aims. How can you use positive reinforcement if you don’t know what the person wants?

At this point I don’t know if ABA can fix the problems that so many autistics have talked about, or escape the allegations of abuse. What I do know is that for treatment of autism to move forward in a positive way it has to do so with the full consent of the people getting the treatment. If that means our first priority is researching how to community, then so be it. Autistics already have ways of communicating. As providers are so fond of saying, every behavior is communication. Why are we so bad at listening then?

ETA: Thanks to Benny Vimes for pointing out that another huge problem with ABA is that it’s often used to push autistics to behave in less autistic fashions, e.g. making eye contact or reducing hand flapping. I will probably write further about this in another post, but hand in hand with the idea of consent is the idea that there needs to be a reason to treat someone. There is NO reason to change a behavior if the person who is doing it doesn’t want to change, unless they are actually literally hurting themselves right now. There is NO reason to force allisticness on someone who doesn’t want it.

My Gray

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Content notice: fairly graphic descriptions of sex. Mention of non consensual sex.

This is a post that has probably been in the works by way of rumbling around in my brain for quite some time now. I didn’t realize that it needed to be a post until I realized how important it felt to me to realize that there were other people out there who had similar experiences to my own, and that in this one element of my life I hadn’t read anyone who has experiences similar to my own. So I decided that I should probably be that person and write about it in case there are other people out there who are confused and frustrated.

A few years ago I started talking about asexuality, and identifying as asexual. I’ve spent quite a bit of time thinking and working through what I want since then, and now am finding that I’m probably somewhere more in the gray asexual spectrum. I do feel sexual attraction, but it’s…unpredictable at best. I have read numerous accounts of what it’s like to be demi and to only feel sexual attraction when you feel a strong emotional connection with people, and that is an element of how sex works for me.

I have wondered and worried whether there’s something broken or wrong about me because one moment the descriptions of asexuality and even sex repulsion or fear ring true to me, but later I will happily have sex with my partner. I continually wonder if it comes down to my mental health or my eating disorder, if once I stop feeling depressed, or once I stop dissociating, or once I stop feeling disgusted by my body, then I’ll simply feel sexual attraction like “normal.”

I’m trying not to pathologize myself in those ways anymore. I want to just say that this is how I am right now. My sexuality is cyclical. This is probably true to a greater or lesser extent of many people, but I have rarely or never heard a description quite to the extremity of mine. When I first start to fall in love with someone (and yes, this is basically a requirement for sexual attraction in my experience) I have extremely strong sexual attraction to them.

However within a few months to a year, all sexual attraction for anyone at all dissipates. I don’t think about sex unless someone else brings it up, or unless I’m blogging about it. I find it very hard to put myself in the headspace of attraction and arousal. I feel for all intents and purposes like I am asexual during these periods.  Typically my sexual attraction will come back about 2 years after I have first started to date someone, although rarely does the relationship last through the drop in sex.

So while there are times that FEEL entirely asexual to me, I have been confused about identifying as such because there are also times that feel entirely allo. These aren’t a day or a few weeks at a time. This isn’t a question of relationship issues or losing my libido after being with a partner for a while. I will go from one day being in a relatively average sexual relationship to the next day not even being able to contemplate sex, feeling some fear of it, and not regaining any of that desire for sex or any attraction to any partner for months. During these times I don’t find myself attracted to other people, or wishing for a new or different partner. I am still very much in love, but all my attraction has basically turned off.

One of the most difficult things about this type of sexuality is that it’s not only confusing to me, it’s also very confusing to my partners, who often come to expect me to be allosexual and then get annoyed and frustrated and feel shut out or unwanted when the shift to ace happens. This has led to many situations in which I felt extremely pressured to have sex with someone and left me with a lot of hair triggers around physical contact in those times, because I have become used to the assumption that any physical contact is an entree to sex.

I have even had partners reassure me over and over that they didn’t want to pressure me, but would ask every day, multiple times a day, like a kid on a road trip “what about now?” They would constantly be trying to up the level of physicality. If I said yes to cuddling, they’d want to kiss. If I said yes to kissing, they’d want to make out. If I said yes to making out they’d want to take clothes off. You get the idea. This led me to the inevitable conclusion that any contact was dangerous.

It’s not all bad though! Here are some things that I’ve found extremely helpful as someone in the gray spectrum navigating a sexual relationship with an allosexual partner.

First, I have learned that I love being turned down for sex. When my partner sometimes says they’re not interested, it reinforces to me that they aren’t ALWAYS looking for sex from me. I know that for the allo partner there can seem like a lot of pressure to jump on it (literally) when the opportunity is presented, because who knows when it will come around again, but when my partner models saying no for me and makes that a more acceptable thing to do in our relationship, I feel safer.

Second, I have found that expanding the territory of what constitutes sex has been incredibly beneficial to my ability to feel comfortable. PIV is probably the most traumatic form of sex for most people who have any sort of negative feelings towards sex. Penetration in general is more likely to result in pain if the person being penetrated isn’t TOTALLY into it. But for some reason PIV with orgasms is the gold standard for male/female sex. Here’s something weird: that can be overwhelming. It’s a time commitment, it requires being emotionally present (at least for me. I can’t do sex that I’ve zoned out during or it becomes truly painful), it often requires work to get people off.

So here’s what works better for me. Sometimes I’m up for oral or digital stuff but not penetration stuff. Sometimes I think I’m up for PIV and it turns out I’m not. But it takes so much of the pressure off if I can make out with my partner for a bit and he can get himself off, or if I can start PIV sex and realize it’s just not working today so we switch to oral or something else. It gives me the space to decide how I want to sexually “hang out” with my partner in this moment, and to change my mind. WHOA. This is great for everyone, not just ace people. But my partner had to make it clear that there wasn’t a better or worse version, or that if he wasn’t getting off it wasn’t a problem.

None of these things are mind blowing, but what was mind blowing was how afraid I have been for so long. I was so confused of leading someone on, of never being able to find someone who loves me but doesn’t WANT NEED NOW sex. I’m perfectly happy incorporating sex into my relationship, and so what I want at this point is just some consistency in what I want and how I approach it.

For me, one of the hardest parts about the gray space has been my own internal attempts to figure out what I want and how to communicate that to others. The ace community has been booming and has started to provide some of these for ace folks, but the gray section hasn’t gotten too much love yet. Ideally this is a start at filling in all of that gray space, giving people an idea of some of the variation of the allo/ace spectrum, and giving more strategies and scripts for figuring out how to feel comfortable with your own sexuality.

 

Money Grubbin’

Photo on 10-20-15 at 6.15 PM

 

 

Oh hey friends. I don’t often ask for money on here. In fact I don’t think I ever have. But I am in the process of raising money for something really, really cool that I am SO EXCITED about and would really like to properly fund.

I recently started working with a local nonprofit that provides support, funding, and resources for people with eating disorders and their families. I have been one of those people, as you probably know from my posts here. I care A LOT about making life easier for people who are fighting the jerkbrains. In this case, I proposed a fund to help people in the earlier stages of recovery buy clothes that fit their new bodies.

This might not seem as important as funding for therapy or research or all the other highly expensive things that eating disorder recovery requires, but if there’s one thing that helped and still helps me immensely in my recovery and in feeling comfortable in a changing body, it’s not having to wear clothes that are too small and that hurt or look awkward and awful. It does wonders to not have to wake up in the morning and fear going in to my closet, hoping that I won’t be triggered by not having a single pair of pants that will feel decent. It helps to not be reminded all day long that my body is bigger by the tight waistband or the way my clothes dig into me when I sit down.

So if you have a few extra bucks, or care a lot about this cause, I would greatly appreciate anything you can pass my way. Click the button below to go to the page if you’d like to make a donation. THANK YOU ALL!!!

Clothing Fund for Recovery | GiveMN

In Which I Address My Eating Disorder With Anger

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I haven’t spent a lot of my time in talking about my eating disorder lamenting how much I regret having the mental illnesses I do or wishing that I didn’t. I try to be honest about how shitty they can feel, but I’ve never been the kind of person who honestly hates their mental illness. I’ve had a love/hate relationship with it forever.

A lot of people that I know are angry at their disorders. They’re angry that it’s taken things away from them or gotten in the way of their lives. I never had that kind of anger towards it. I never felt like it was getting in the way of anything. I never wrote open letters of hatred telling my eating disorder how shitty it was. I try to be open about what the experience of having my eating disorder is, but I so rarely conceive of it as anything separately from me that I can’t feel like that towards it.

But for some reason that changed today. I happened to read an article by someone I knew in college. She writes for a site that I love and that I would feel honored to write for. I looked back over what she’s done, and she’s accomplishing so much. I felt a flash of jealousy, because I want to be that person that people look up in a few years and feel awe over how much they’ve done.

I took a moment to remind myself of what I’ve been doing recently, things that I’m proud of. I’ve been published on a number of sites, I’m working somewhere I love, I’m working to build a fund to help people with eating disorders. These were all things that have happened in the last year when I was finally hit with the realization that if I want something to get done I can just do it. I don’t have to wait for permission, I can simply call the people I want to work with and get it done.

And I wonder how much sooner I could have had that realization if I wasn’t so busy telling myself that I deserved nothing.

I have always been motivated by accomplishment. But somehow being obsessed with accomplishing kept me from actually working on getting things done, or realizing my own ability to do things. And now I’m just a little bit angry. I’m just the teensiest bit pissed off that my brain’s particular constellation of oddness managed to convince me that I wasn’t allowed to send an email or show up to an organization and just say “here’s what I want to do and here’s how I want to do it. Will you help me?”

I’m sure that I have grown in my ability to conceive of projects and understand how to accomplish things in the real world as well as in my mental health in the last few years. That’s what happens when you start working instead of living in college world. But I had the critical thinking skills to figure out most of it. I conceived of some of these projects three or four years ago and simply thought that I wasn’t old enough, wasn’t connected enough to make it happen.

I was. And I am angry that I convinced myself I didn’t deserve it or couldn’t do it. If anyone else in the world had told me that I would have put in any amount of hours to prove them wrong.

I wonder if this is a step towards a healthier mindset. Or if it’s just that the eating disorder had never taken anything away from me that I cared about before. Either way, it’s something to fight back against.

That leaves me in a weird position. For the last couple of years I’ve been trying not to fight. Instead I have been trying to find ways to embrace the particular oddities of my mind. I’ve been trying not to make my mind a battlefield, because I do that pretty naturally anyway. So it’s odd to suddenly have a realization that I have violated my own boundaries and hurt my own values in such a blatant way.  I’m not sure what to do with the information, or whether I will start to take on that “fighting” mentality that some people do. But at the very least, I’m thoroughly upset and will make my jerkbrain take a time out for keeping me from being as awesome as I could have been.

 

I Know This One: Identity and Object Permanence

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Last week I did something exciting. Hold your breath, this one’s gonna blow you away.

My mom told me something about how I was as a child and I disagreed with her.

Yeah, let me give you a minute to pick your jaws up off the floor. Sarcasm aside, this was a big deal for me, although for many people it might just seem like a normal experience. Because I do not trust my memory, my perception, or my interpretations of events. I have struggled with this for a long time. I relied on grades to tell me that I was smart, because I didn’t believe it otherwise. I relied on friends and my parents to inform me that I was kind and interesting and caring.

And if someone said something negative about me, I was suddenly sure that they were right. I’m not sure where this comes from in my brain, but it’s almost as if I don’t have object permanence about myself or traits about myself. Facts slip away quickly, and I find myself uncertain about whether I’m rational and reasonable, thoughtful, needy, demanding, or something else I would never expect. When I get into an argument with someone else, I feel as if I’m losing my mind because suddenly all the things that I had thought so clearly a day or two days ago that were bothering me are gone the moment they say I’m wrong.

I think this is at the root of some of my inability to create a strong and stable identity. I have a hard time feeling secure and certain of myself and my abilities, of my worth in the world, because all those facts are like water in a sieve to me. Of course thanks to depression brain, my negative thoughts stick like burrs, but that means that any identity I have is based entirely on bad thoughts about myself. Then I’m told by family, friends, therapists, everyone to argue with those thoughts. It leaves me in a horrible situation of not knowing who to trust and not being able to trust myself, particularly because I start to question my own memories when someone tells me I should have interpreted things differently.

I don’t talk about this element of my mental health as often as I do some of the others. It’s one that I’ve only started to notice as a pattern recently. I don’t know how it fits in to diagnoses or labels. And more than any of that, it’s the one that puts me in the most vulnerable position, and makes me susceptible to manipulation or abuse, even unintentional. And this is the trait of my brain that leaves me feeling the most “crazy.” It does seem as if I’ve lost my mind, and can’t find any footing in reality. It seems to turn me into a stereotype that can’t fend for myself, and it makes me feel as if I can’t self advocate anymore because who will trust what I say when I can’t even trust my own experiences?

But if I’m committed to transparency about my mental health, and particularly as I start talking about positive milestones in my life, I have to talk about this. Because this moment of knowing with certainty that what someone said about me isn’t true is something I have never felt before. Not only that, but I managed to retain positive or neutral information about myself and then stick up for that piece of information, hold on to it as true even when someone disagreed.

Yes, later I did feel like I had to check in with other people who knew me when I was younger to make sure I hadn’t lost my mind. But it was still a step. It’s one piece that I can rely on and build from. I’m not entirely sure how I helped myself to this point, but I do know that I have been working endlessly on simple reminders. I have started to collect moments and facts. I write down everything that I get done and look back at it periodically. I mark out events in my brain, like the picture I took last year of me stuffing my face with a burrito when I finally felt “recovered” for the first time, or the feeling on Monday when I finally had enough work at work to last me a full day and then some (and it felt amazing), or the generosity I showed when I randomly get people gifts because I can and I want to.

I have made enough lists of my values that now I don’t have to look at them anymore, I just know them. And I know that I act on them whenever possible. I have thought so carefully about what I want my life to look like in order for me to feel comfortable and stable, that I can imagine it in full detail. And I know what I look like, because I simply fill in around the edges of myself until I see my shape.

I certainly don’t understand the world fully, but I think I’m beginning to understand MY world, which means that I know where I fit. As the incredibly cheesy DBT lingo would go, I’m starting to see what a life worth living would look like. That tells me more about myself than it does about anything else. I don’t have to please everyone else. I can do what fits my values instead. I don’t have to trust everyone else more than I trust myself

Which all means holding on to reality a little bit better. Which means I’m starting to remember better. Which I guess means that there’s hope, even when I do feel completely lost. Hope that I will be me someday. I don’t know how to end this because this is certainly not any sort of neat ending or conclusion. It’s the flicker of a beginning, something barely of note except that I didn’t realize what I’d been lacking for so long.

I’ve spent a lot of time in grandiose ideas, morality, black and white ideals, instead of boring practicalities. These things seem appealing to me. Unfortunately what I need to hold on to are the basic, simple facts about who I am and what I do. Here’s to looking for boredom.

 

Don’t Tell Me I’m Beautiful

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Today I posted a Facebook status that I didn’t expect to get much of a response. It was personal and complaining, saying that I love body positivity but that I have a hard time internalizing the messages because I want to see how people view my body.

What amazed me was the number of responses I got. It wasn’t overwhelming, but there was an instant response from a number of female friends who said that they as well couldn’t seem to get over their insecurities, despite hearing from significant others or partners that they were beautiful. Others talked about how powerful it was to have nude photos taken, or work as a model, because it was outsiders seeing their bodies as art.

It’s not a secret that there are lots of negative messages aimed at women in regards to their bodies. Between 40 and 60% of girls age 6-12 worry about getting fat. We get messages early and often about the ways in which our bodies should change, so it’s hardly a surprise that many women do internalize those messages. And while I certainly appreciate when partners and friends tell me that I’m beautiful, what I’m hearing from these responses and what is becoming clear in my own mind is that first, it is not enough for the people we are closest to to affirm us, and second, when only those closest affirm us, it leaves us in a stressful and confusing position.

My friend Brianna summed it up quite well: “I have body image issues and I don’t really believe the things that my SO’s have [said] or do say about its beauty…so I always thought that seeing my body through the eyes of someone else would help me see what they see. I want to see my body as positively as they do, but it’s difficult for me to accept positive feedback from those I’m closest to. Perhaps it’s inconsiderate of me to not see my body positively despite my SO’s insistence, but some part of me just can’t or won’t believe it.”

What truly sticks out to me about this comment is that she says it might be inconsiderate of her. How telling is it that women feel that they have done something wrong when they can’t think positively about themselves, even though the world is repeatedly telling them not to?

Here’s where things turn stressful. How do you reconcile it when someone that you love and trust is telling you something that you cannot, no matter how hard you try, believe? How do you maintain trust and love when that person tells you things that look like lies on a regular basis? It hurts to be in this position. It hurts to choose between telling your partner that you don’t believe them or lying to your partner. It hurts to try to snuff out a voice inside yourself, even if that voice is cruel or irrational, because your partner has told you something different. It hurts to feel as if you’re being stubborn or untrusting because you can’t just believe your partner.

I end up feeling as if I can’t tell where reality rests. Am I being irrational for not believing? Are they blind or insane or lying? Will they find me out some day?

I don’t have any clear ideas of how to make this situation better, because the answer is definitely not “never tell your partner they’re beautiful.” But when a partner says that to me it feels like a huge pressure to react “properly” and learn to see myself the way they do. I feel as if I’m not grateful if I need more. Just as I felt selfish when I posted that status for wanting to see the way a stranger sees me, I feel as if I’m ignoring all the kindness of a partner when they compliment me.

But society has told me a thousand times that my beauty is only worth it if everyone sees it. It tells me that beauty is objective and distant, not a product of love and care. So can anyone truly blame me if I want to see myself through a stranger’s eyes, see art in my lines or sexiness in the swagger of my hips?

It is a problem to me when my partner holds all the responsibility for propping up my self esteem after the rest of the world has torn at it. This is why I love body positivity projects. This is why I love to celebrate the bodies of my friends, and even strangers. Because if it’s up to one person to convince me that I’m beautiful, I’ll never believe it. And it’s more likely than not that eventually I’ll come to blame him. So you. Yeah you. Your body is fucking fantastic. I’m not kidding. Send me a god damn picture. I want to be one more voice that sees how lovely you are.

If I were an artist I’d paint all of you. Believe me.