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.

Square Peg in a Round-Hole-World

This heteronormative, neurotypical society was not made for someone like me. Me, gay and Autistic. I am a square peg trying to live in a round-hole-world, and yet the more I try to squeeze in, the more I feel that I am losing parts of my own soul. I live on the fringes, because in this society the majority gets most of the privilege and the minority is marginalized. I feel like the "Other". Where is there is a place for me?

There are definitely beautiful and special things that come with being on the Autism spectrum. I believe that Autistic people possess gifts that many neurotypicals lack. We are the guileless ones, the genuine ones, the ones who hope for the best and believe the best about everyone. We are the sensitive ones, who feel the pain of others (humans and animals) in ways that are ineffable. I am not denying the gifts that we have.

But there are definite challenges, and these challenges are made all the more difficult because support and accommodations are not easy to acquire. Because I am a minority. Because this is a neurotypical world. And therefore, there is a lack of understanding, and where there is a lack of understanding, there is a lack of assistance and support.

The older I get the more I feel that ASD really is a "pervasive developmental disorder". The older I get the more I feel developmentally delayed, in the social, emotional, and executive functioning realms. What makes this more frustrating is that intellectually, I am gifted/advanced. I'm smart. I know a lot of things. I've had a good education. Sometimes when I talk to people, I sound like a wise old sage.

Because of my intellect, and because I know the expectations of this society, I know what I should be capable of doing at my age. I know that I should be capable of holding down a full time job. I should be able to live independently, cook meals for myself, and do the required household chores. I should be able to go through the needed steps to apply for graduate school. On a social and emotional level, I should not be feeling/acting like a 14-16 year old.

As you will observe from my last post, I work very hard to present as "normal" (i.e., non-autistic) in most of my everyday interactions with people. But this does not translate to everyday life and functioning. I can't always fake it that well. Yet because I can act normal at times, and because I'm smart, people expect me to be able to keep up and do the things that {they think} I should be able to do.

I'm expected to be able to function like the majority. But it doesn't work. It's not working. I'm at a crossroads, a new stage of life, and I should be going out and getting a job and making my mark on the world. But I'm stuck and trapped and scared and lost. I just can't keep up. It's too hard, and people just don't understand that.

Tonight I'll sing my songs again
I'll play the game and pretend
But all my words come back to me
In shades of mediocrity 
Like emptiness in harmony
I need someone to comfort me

:: Simon and Garfunkel, "Homeward Bound"

Social Heuristics/Rules of Thumb

Being a person on the Autism spectrum, successfully navigating social interaction does not come easily for me. I have developed my own set of heuristics that I apply to social situations because the things that come naturally for neurotypicals are not natural for me.

Heuristics are rules of thumb. They are not fool-proof (unlike algorithms). I say that I have developed heuristics because applying these doesn't mean that every conversation will go off without a hitch...because people are unpredictable (which is frustrating, but that's another topic for another day).

Obviously, this is not an exhaustive list. If you think of other things, feel free to mention them in a comment.

Note: In this list I use the pronoun "you" because I say these things to myself. "Rae, remember that you need to do this."

My general heuristics for everyday conversation:

1. If you see someone you know and they smile at you, smile back.
2. If someone says hi to you, say hi back. (WITH A SMILE)
3. When you're talking to someone, look at in in the general vicinity of their eyes as often as possible (it's okay to look away when you're trying to gather your thoughts).
4. If someone says, "how are you doing?" answer with, "fine" or "I'm good" and then say, "how are you?" Usually this phrase is used as a greeting, NOT as a real question. Do NOT start a monologue about how you're feeling--unless you're pressed for more details (usually by a close friend), but even then, don't go on and on. Same goes for "how was your day/week?"
5. Remember personal space. Stand about an arm's width away unless they're an intimate friend/partner. Getting too close can make the other person feel uncomfortable.
6. Do your best to make sure your facial expression matches the topic of the conversation. E.g., knit your brows and frown a little if they're talking about something sad. IMPORTANT: Do whatever you must to make sure you NEVER laugh or smile at someone when they're angry or upset.
7. Try to keep things as back-and-forth as possible. E.g., if they ask you a question, give an answer and then ask a question back.

Heuristics for how to show that you're listening/paying attention:

1. Look at their face as much as possible
2. Nod every once in a while and say, "uh huh."
3. Tilting your head a little and leaning in towards them a bit shows that you're really concentrating on what they're saying.
4. Use some of these words/phrases when appropriate: "yes/yeah," "I see," "that's interesting," "okay," "right," "that makes sense," etc.
5. Try not to cross your arms when standing and talking to someone. It gives a "closed off" impression.
6. Do NOT interrupt. What they're saying is just as important as what you want to say. Wait your turn.

Bottom line:

If you don't use these heuristics, you'll probably end up doing something outside of the expected social  norm. People don't like when others do unexpected things. It can make them feel uncomfortable and embarrassed. This is BAD. People will always remember how you made them feel, and if they remember feeling uncomfortable or embarrassed around you, they won't want talk to you or be around you.

Handy tips:

1. It's okay to ask clarifying questions. If you're not sure if someone is joking or using sarcasm, it's okay to ask, "Were you joking just now?" Just make sure you keep your tone friendly. It's also okay to say, "That was really general and abstract. Could you give a concrete example?" It's ALWAYS better to ask for clarification than to risk misunderstandings. Misunderstandings often lead to discomfort and embarrassment, which we know is not good.

2. Offering a brief explanation is sometimes the best thing you can do. For example, you're with a person who overuses sarcasm and non-literal language. Saying to them, "I tend to interpret things literally and I'm not good at catching sarcasm, so sometimes I might ask you if you're being serious or not" offers them extra information for how to understand and relate to you.

Like I said, these are things I use for myself. Other Autistic people may or may not find them helpful. I wrote this up because I thought it would be interesting to discover what exactly I'm doing as I work to navigate social situations as "normally" as possible. I realized just how exhausting it is. No wonder I'm so wearied after hanging out with people. Thankfully I do have some people in my life around whom I don't have to work so hard and I don't have to use these heuristics all the time. It's mainly in professional situations and when I'm meeting new people.

In my next post, I'll talk about why sometimes these heuristics don't work and how things can go awry.