I want an embracing

Today I was asked what I wanted. I read a blog post written by a friend, and this is what she wrote: "I want to hear your wants," she said. "I want the inner ones. The ones that take bravery and a lack of self-consciousness to say." People don't ask things like that very often. I can't remember the last time someone asked me what I truly wanted.

There really are many things I could write about. I actually want a lot of things. My soul has some very deep, deep longings. But there's one main thing I want. And this one thing trumps all the other things, so I'm going to write about that. So listen to me. Because I'm about to tell you what I want.

I want an embracing. 

In the dictionary, the first listed meaning of the world embrace is, "[to] hold someone closely in one's arms, especially as a sign of affection." The second meaning is the one I'm talking about. "An act of accepting or supporting something [or someone] willingly and enthusiastically."

I want to be embraced. I want to live outwardly as my whole self. I want to live in a world where I can feel safe when I'm being myself. Where being authentic doesn't make me a target. Where there's no ableism to fear. No judgments, no ignorance, no meanness. A safe world, where it's okay if I am sensory defensive, or sensory seeking, or if I want to carry a stuffed animal around with me everywhere because it makes me feel happy and calm. In a world where it's okay if I stim how I want to, where people don't say, "Hey, don't do that hand clapping thing. You look autistic." Where it's okay if I don't look at people's eyes, and where people don't expect me to try and laugh at the jokes that don't make sense to me.

I don't feel embraced. There are people out there trying to teach me to associate "Autistic" with "shame". Who tell me I shouldn't disclose and I should "pass" as neurotypical for as long as possible. Well meaning people tell me that if I disclose and if I act like my true self (i.e., if I don't work hard at passing), then I won't get a job and I won't get into graduate school.

I want people to be understanding and wise. I want people to be open minded and not to think "antisocial, incapable, weird, slow, awkward, not empathetic" when they hear the word "Autistic".

Messages all around me scream HIDE YOUR AUTISTIC SELF and NO ONE WILL LIKE YOU IF YOU SAY YOU'RE AUTISTIC. Or what sometimes feels worse: NO ONE WILL BELIEVE YOU. I want a shame free world. I want to be told that my neurology is lovely, and that I am beautiful not in spite of my Autism, but because of it.

I want an embracing. And really, isn't this what everyone wants? To be accepted, even down to their innermost being? Do we even know what this looks like?

To me, when I picture it, I picture something like a welcome home party. Where there's a big group of people, and they're all grinning broadly. Why are they smiling? They're smiling because you are coming. You're coming to see them. They are celebrating you and your existence. There's cake and streamers and balloons. People are cheering, and all around you, you're surrounded by this feeling of I. Am. Wanted. 

I think that's what an embracing is. I think that's what it looks like and feels like when you, ALL of you, is deeply accepted. It's this knowledge that you are wanted. It's not that you're just being tolerated. It's that you're being celebrated. Embraced. Welcomed. Cherished.

That. That is what I want.

Using Accessible Language

The social model of disability asserts that society is the primary contributing factor in disabling people because of the barriers society places (purposefully or inadvertently). Disability rights activists fight to remove these barriers. As such, disability rights activists talk a lot about accessibility. Activists fight for accessibility to buildings and venues for people who use wheelchairs. Blind disability activists fight for blogs and emails to be written in plain text so that the words are accessible to them and can be read aloud by their computer programs. Etc, etc.

Lately I've felt that one area of accessibility that isn't talked about enough is accessible language. By accessible language, I mean using language that is accessible (understandable, graspable) by everyone regardless of disability status. Of course we know that Autism is a disability that affects communication. Autistic people often communicate differently, and we often comprehend and use language in atypical or uncommon ways.

One area that this impacts is the area of sarcasm and irony. By and large, Autistic people are literal people. This doesn't mean that we think sarcasm is bad; we just typically don't get it. This also doesn't mean that we don't use it. I use sarcasm frequently. I think it can be really funny and can be a clever way to get a point across. But when I am being sarcastic, I always try to make it clear that I'm not being literal. However, for the most part, I don't understand other peoples' usage of sarcasm. When I know someone really really well, I'm okay at picking up their sarcasm (usually). But when the average person uses sarcasm, my automatic reflex is to take all their language literally, so I get confused. This confusion can lead to feeling upset, because it can be really upsetting to not know what's going on or to not understand what someone is meaning.

I tend to just let people know upfront that I don't get sarcasm. I don't ask them to refrain from using it around me; I just let them know that I'll probably ask for clarifications a lot. There are some people who communicate sarcastically almost exclusively. I usually just choose to not hang around or befriend those people, because it's too hard to decode what they're saying. Which is fine. People can be as sarcastic or ironic as they want, and I have the freedom to decide whether or not I want to be around sarcastic people.

However, if someone is giving a presentation, lecture, or talk that is advertised as being open to everyone, I feel very strongly that their language should be accessible to everyone. This means that they should choose to use language that can be understood and comprehended by people who have disabilities that affect language and communication. What does this mean? It means that they should err on the side of using literal, straightforward language, OR if they choose to use sarcasm, they should make it clear that they're being sarcastic, and they should explain their sarcasm as necessary.

I'm writing this post because recently I got together with a friend who told me about a mental health talk he gave on a college campus. This talk was advertised as being open to all students, staff, and faculty. Everyone was welcome to come and listen. It sounds like it was a good talk. It addressed various mental health issues that I think are important. I'm glad this friend gave this talk. Mental health awareness is a good thing. But what isn't a good thing is that he used heavy doses of sarcasm in his talk and power point slides. What's an even worse thing is that he assumed that people were going to understand that he was being sarcastic. He even said as much to me. He said, "When people saw this one particular slide, of course they knew I was being sarcastic. How could they not? It was obvious." This upset me, because had I been at his talk, I can almost guarantee you that I would NOT have assumed he was being sarcastic. I would have been confused, which likely would have lead to me feeling upset and lost. When I pointed this out to him in a subtle, "dude, your ableism is showing" kind of way, he brushed me off and didn't seem to care. 

This was distressing to me, because he's usually such a good ally. He's not usually ableist, and I usually don't have to call him on his allistic (neurotypical) privilege. But this sarcasm thing was one thing he just wasn't willing to let go. Frustrating. Really frustrating. I couldn't understand why he couldn't see that he was contributing to the social model of disability by not making his language accessible. It just didn't seem like a hard thing to change, and I'm pretty sure that when you make your language accessible to all, you make it much more powerful. Shouldn't he have wanted that?

Executive Function Fail (with pictures)

I'd have to say that one of the tougher parts of being Autistic is having so much executive dysfunction. But before we talk about dysfunction, let's talk about what executive functioning is. The first sentence of the Wikipedia article on executive functions says, "Executive functions is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes, such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions."

So basically, every time you complete any sort of task, you're relying on your executive functioning skills. This could be anything from cooking to getting dressed, from doing a math problem to following a map. Any task that has steps (i.e., do this, then do this) requires executive function skills. It's no secret that Autistic people tend to have executive dysfunction. This dysfunction affects various things in varying degrees, and of course, like everything, it varies from person to person.

My executive dysfunction really shows up when it comes to cleaning, cooking, and organizing. These are the two main things that make independent living quite difficult for me. Cooking, cleaning, and organizing require too many steps, too much planning, too much working memory, too much mental flexibility, and requires me to initiate and monitor too many actions...and forces me to try and make too many decisions. It's like there's a short in my brain. Whenever I have to attempt to do a cooking or cleaning task, it's like my brain just freezes up and fizzes out. It's not that I'm lazy. I'm not. It's not that I'm not smart. I am. It's just that for whatever reason, Autism really affects this part of my neurology.

Case in point: I recently moved out of an apartment that I shared with a roommate back into my parent's house. I did this for a variety of reasons...mainly to save money. The problem is this: At my apartment, I had my own bedroom that had a lot of stuff in it. But I still had a bedroom at my parents house that had a lot of stuff in it. So when I moved out of the apartment, I had to somehow figure out how to squeeze two bedroom's worth of stuff into one bedroom. It's not working. I put the big items in a storage unit (furniture, etc), but a lot of stuff I just need to sort through, organize, and pack into boxes or containers before I can store it.

It's not going well.

Basically, I just don't know where to put things. I have a couple boxes filled with random items sitting on top of each other. I need to sort through them, take out what I'll want to use, find somewhere to put those items, and then pack the rest away. Random clothes that I don't know where to put get stacked up against the wall. Small items get tossed onto the dresser.

I have long rectangular container filled with old school items and book. Papers, notebooks, books I read for English classes, music sheets...you name it, it's in there. And I have no idea what to do with it. So there it sits. Also pictured is a roll-along-backpack that I have yet to unpack from my beach trip. And of course some random shoes and a hoodie. (Note: putting things ways (and unpacking) requires SO MUCH executive functioning too.)

All the papers that aren't in that aforementioned container have been tossed onto my desk. Some should just be thrown away, but some I want to keep. But I don't know where to put them. And I don't know how to initiate the sorting process.

Lastly, the book pile. I've rest all of these books. Most of them I don't have a desire to reread, but of course I want to keep them, because I enjoyed them, and I like having a substantial book library. But again, where do they go? The small bookshelf I already have in my room is chock full and overflowing. I don't have room for another piece of furniture. I need to get them more organized...maybe bring in another container to put them in...store them in the attic for now? I don't know. Again, don't know how to initiate this process or where to start.

Basically, I need to do some serious organizing. I need boxes and containers. But what's almost as difficult as the organizing process is the decision making process. What do I keep and what do I store? What if I end up storing something that I end up needing to use? How do I predict whether or not I'll want to access or use something? All this decision making stuff involves executive function too. AND IT'S NOT WORKING. So here I sit, day in and day out, in this messy chaos. Not because I'm lazy. Not because I'm procrastinating. But because I'm Autistic, and my executive functioning skills are poop.

Oh, I just found out that there are these people called professional organizers. Hmm. It might be worthwhile to look into this...

Minority Experience: Opposing Messages

"What characterizes a member of a minority group is that he is forced to see himself as both exceptional and insignificant, marvelous and awful, good and evil." --Norman Mailer 

When I first read this quote, I lost my breath for a bit, because the truth of this knocked it out of me. This is profoundly, profoundly accurate.

Members of minority groups constantly receive opposing messages, and as we try to create our concept of self, we have to sort through them and figure out what to believe and what to discard. The danger here is that when a person hears that they're bad over and over and over again, more often than not, those messages are louder than the ones saying that they're good.

Of course, the LGBTQ community constantly hears and reads things about how "awful" and "evil" they are. There's Westboro Baptist Church telling us that even God hates us and that we'll burn in hell. We're victims of hate crimes and bullied to death. We're told that our voices are insignificant and that we don't deserve the same rights as everyone else. We're forced into positions of second class citizenship.

On the other hand, we as a community (along with our allies) work to combat these messages of our insignificance, awfulness, and evilness. One main way we do this is through Pride events. We celebrate our existence, because there are still so many who don't. We know we are worthy of equal treatment and worthy of respect. On our good days, we know that we are marvelous and exceptional people, and we try to remind each other of that. And we hope that somehow our voices are loud enough to drown out the others.

The same goes for being Autistic. At worst, we hear that we are awful and evil, and capable of committing mass murder because we're lacking in empathy, and that we should be exterminated. And sometimes the best we hear is that we're mediocre and insignificant, that we need to be cured and changed and made into something normal and significant. We hear that no, we're not evil per se, but we still should not be here. We need to be fixed.

The voices of Autistic self-advocates and our allies try to dispel these lies. We know that we are exceptional, and we are capable of doing great things. We know that we offer a unique perspective and that we are valuable. We know that at our core, we are good and guileless, and that we are caring and sympathetic towards others. We are marvelous, and we are beautiful, and we make the world a better place. We say these things, and we remind each other of these things. And again, we hope that our voices will be loud enough to drown out the others.

This is the experience of the minority. This is what I deal with, on two fronts. I know that I have the right to exist and be accepted, but those competing messages, the bad ones, they still eat away at my psyche. On good days, I'm strong and confident despite these negative messages. But on weak days, I question myself, and I waffle, and I feel deflated and defeated.

I hope that I live to see the day in which I don't have to try and make sense of these two competing messages. I don't want to fight for the right to be viewed as good. I want to live to see the day when everyone, regardless of their minority status, is taught to see themselves as exceptional, marvelous, and good.

For the love of the children

If you pay attention to the news at all, you've probably read about at least one gay teen who committed or at least attempted suicide. It is well documented that suicide rates among LGBTQ youth are significantly higher than among the general population. While reviewing research literature that would comprise the backbone of my senior research proposal, I was shocked by how many studies show that sexual and gender minority youth are at such a greater risk for suicide and substance abuse. It's heartbreaking. 

But less well documented and certainly less talked about is the fact that rates of suicidal thoughts are 28 times higher among autistic children than among their typically developing peers. Twenty-eight times higher. Let that sit with you for a moment. Autistic kids are 28 times more likely to consider ending their life than are non-autistic kids. That's devastating. 

Different explanations for these statistics are thrown out there. Bullying is certainly an issue. I'm really thankful for the Day of Silence campaign, the It Gets Better Project, and the StopBullying.gov website. The first two are specifically dedicated to bringing awareness of anti-LGBT bullying, as well as providing hope. I'm thankful for this, and I think the It Gets Better Project has done a lot of good. It's exciting to see so many celebrities and even President Obama get on board with this.

Anti-autism bullying is prevalent too, and seems to be a likely cause for the higher rates of suicidal ideation. I wish that there would be campaigns out there to bring awareness to this. If it's true that 1 in 88 children (or whatever the current stat is) have ASD, then I feel like this should be a pressing issue, a significant need. I hope that one day it will be.

So yes, bullying is an issue. But honestly? I think most of these suicidal thoughts and attempts can be prevented simply by having an accepting and supportive home environment. If kids know that they have a safe base at home where their parents and siblings will provide love and encouragement, I think that this wouldn't be nearly the issue it is.

However, the fact of that matter is that many times the home is where these kids receive the least amount of unconditional acceptance. It is a well known fact that many LGBT youth face rejection from their families, and are often evicted from their homes.

This post was inspired by the fact that I recently heard a dad say about his autistic daughter, "I wish we had a normal child." Read that again: I wish we had a normal child. When I heard this, I was so angry I couldn't even speak. You know what's worse? This kind of sentiment among autism parents is very common. You won't always hear them saying straight up that they want a normal kid (but sometimes you will!). What you often hear is that they "hate what Autism has done to my child" or "Autism stole my child from me" or "I wish my child wasn't autistic" or "we need to fight for a cure for Autism." All of these things have the same thing at the core: non-acceptance of their autistic child.

You see, Autism can't be separated from a person. Wishing for a non-autistic child is wishing for a different child. It's refusing to accept and love the child for who they are. Autism doesn't steal children. Autism isn't a leech or a disease that reeks havoc on people. Yes, autistic children will be different from allistic (non-autistic) children, but different is not less.

Trust me, autistic children know when their parents don't love them for who they are. Even though we might not read every single bit of body language, we're not stupid when it comes to things like this. That sort of daily rejection of one's personhood very often leads to depression, which can lead to despair, which can lead to suicide.

Statistic don't lie. And these statistics that I cited today should be very sobering. They are to me. Especially because they relate to my two communities--the LGBT community and the Autistic community. These are my people. These are good people. And they deserve to be loved. And accepted. And cherished. They deserve to know that they have an unalienable right to life. 

So please, for the love of the children, do what you can to make sure that these minority kids know that we need them, and we love them, and the world is a better place with them in it.

Why ABA therapy unsettles me

First, a crash course in what ABA therapy is. ABA stands for Applied Behavioral Analysis. In short, ABA therapy initially inspired by B.F. Skinner's work in operant conditioning. Basically, ABA is used to modify behavior, primarily by means of rewards and punishments (the psychological terms are reinforcers and punishers).

ABA therapy is the most commonly used form of therapy to "treat" ASDs. Specifically, the Lovaas model is used. This model recommends 30-40 hours of therapy per week in order to gain the best results. This many hours is recommended for children under the age of five. Yes, you read that right. Proponents of this model assert that autistic children aged 5 and younger should be in full time therapy. If that makes you uncomfortable, good. Sit with that discomfort.

And now I'll put up this disclaimer: I do not know everything there is to know about ABA. I have not personally been subjected to it. However, I have observed it in practice, and I have read numerous accounts by Autistic adults who decry it. I do know many Autism parents say that their child has greatly benefited from it. I will not be making sweeping generalizations and saying that all ABA is bad. However. Autistic voices should weigh more heavily than non-autistic voices in this matter, and there is enough bad out there to make me very unsettled by ABA in general and certain core tenets of it in particular.

My first problem with ABA is that it approaches Autism from the perspective of something that needs to be treated. It says that certain (many?) autistic behaviors need to be modified and made extinct. So from the outset, it is not respectful of Autistic people. It reeks of ableism, emphasizing that there are certain behaviors which are better or more right than other behaviors. ABA operates from the basic tenet that Autistic behaviors are not acceptable. This unsettles angers me.

One thing that ABA therapy does is it tries to teach autistic kids to engage in "functional play". I.e., "functional play" is however the neurotypical, non-autistic kids play. This is implying that the way autistic kids choose to use (or not use) their toys is dysfunctional by nature, and the autistic kids need to be retrained how to play in "functional" (read: normal) ways. This is absurd and I'm not okay with this. I hope you aren't either.

My second problem is that ABA therapy is a lot like dog training. Or more accurately, rat training. B.F. Skinner did his operant conditioning trials with lab rats. He used rewards and punishments to train his rats to push levers and go through mazes. He trained his rats to act in ways that were not natural for them. Your average dog owner applies similar behavior modification techniques to train their dogs to sit, stay, heel, etc. I'm unsettled angered by the fact that the leading "treatment" for Autism is often not too different from how we train animals.

"But Rae," you might protest, "what if kids engage in self-injurious behaviors (SIBs) that are damaging, and what about other problem behaviors? What about teaching them to communicate and other basic skills?" I am not denying the fact that there are certain interventions that may need to be employed. I'll reiterate this: My number one problem with ABA is that it often does not respect the basic human rights of an Autistic child and instead views them as less than human who need to have certain behaviors trained out of them (much like dog training), and replaced with "normal" behaviors. It operates from the viewpoint that Autism is lesser and needs to be fixed. It is steeped in ableism and posits that acting non-autistic is preferred.

So. If interventions and therapies do need to be used, they should start with viewing the autistic child as a person possessing inherent worth, not as a diseased/lesser person that needs to be fixed or changed or healed or treated. Start by seeing the autistic kid as a human being with unalienable human rights, and you'll be okay.

{Not} All Welcome Here

Innately, I am a spiritual person. It's part of my core being. I might even venture to say that I'm a religious person. I love traditions and I love liturgy. For example, I love Judaism. I think that Judaism is a beautiful religion, steeped in so much tradition and culture. They have stories to go with every Feast Day and Holy Day, and they have traditional words that they repeat to each other over and over and pass down from generation to generation. The words of the Shema are sacred, and observant Jews believe that reciting it twice a day is a mitzvah (commandment).

But I was raised Christian. Conservative, Evangelical. My childhood wasn't very stable and things changed a lot, but one thing I could always count on was church. Every Sunday, every Wednesday. When the doors were open, I was there. And for the most part, I liked it. I craved a God connection, and I've always felt drawn to the supernatural. Jesus has always been my biggest Hero; His gentleness comforted me and His fierceness awed me.

When the Church is a place of belonging and community, it can be a taste of heaven on earth. But many times it is not that, and the older I got, the more I loved Jesus, and the more I felt disenchanted by the church. My heart began to resonate with Gandhi's piercing words. "I like your Christ. I do not like your Christians. Your Christians are so unlike your Christ."

So many Christians I knew were so unlike the Christ I knew. They were not welcoming to all the way He was. Sure, they put signs out in front of their buildings that say, "All welcome here!" but I knew. I knew better. All did not mean all. Specifically, they did not mean me. They would not accept me as I am. And isn't that one of the most beautiful things about Jesus? He accepted people as they were. He touched the unclean, ate dinner with the outcast, empowered the oppressed, and refused to condemn the adulteress.

I like to think that He would've eaten dinner with me too. That He would've called me daughter, sister, friend. That he would've refused to condemn me, even if I was surrounded by accusers. Because you see, I am the condemned. The accused. The unclean. The outcast. The oppressed. Because I am gay.

As so for me, more often than not, the church has not been a place of belonging and community. This is heartbreaking, because my whole soul cries out for the Living God. To be told that I am not welcome at the House of God is to keep me from my very home. It makes me homeless. Vagabond. 

But I remember that the Son of God had nowhere to rest His head either, so perhaps, even in my homeless loneliness, I am in good company.

:::
:::

I will say (with rejoicing) that there are Churches that will and do welcome me as I am. And I have been to some of them and my soul has been fed. My heart bursts with gratitude to know that things are turning around and Christians are becoming more like their Christ. There is a growing list of affirming and reconciling churches, and my it makes me swell with joy. But there is still a gnawing ache in my heart because I am not welcome at the church of my childhood, nor am I welcome at many, many, many other churches. Things are moving Christ-ward-ly, but there's a long way yet to go.