Wednesday, November 22, 2017

Autism and Intense Interests: Why We Love What We Love and Why It Should Matter to You

mardi gras bead overload
Photo © Deanna | Flickr/Creative Commons
[image: White child with short brown hair holding up
a massive bunch of colorful Mardi Gras beads.]
Maxfield Sparrow

If you know an Autistic person or are Autistic yourself, you are familiar with the intense interests and consuming passions that we can get so engrossed by that we forget to eat, sleep, or even use the bathroom. While not every Autist has one or more deeply-lived interests*, the laser-focus with which we can approach preferred things is generally considered one of the hallmark traits of autism.

An Australian research study from 2016  demonstrated the tremendous value of going directly to Autists, by asking us about this tendency in order to discern our motivations. The researchers wanted to answer the question: why are Autists drawn with such intensity to the things that catch their interest? To that end, they developed a 20-item, self-administered assessment called the Special Interest Motivation Scale (SIMS). Statements about why one pursues one’s deep interests such as “because I enjoy broadening my knowledge about my special interest” were ranked on a seven point Likert scale.

The 20 items were divided into five broad categories:
  • Personal life values and goals
  • Intrinsic interest and knowledge
  • Prestige
  • Engagement and “flow”
  • Achievement
Based on the results of the SIMS—from 158 professionally-diagnosed Autists (86 males and 72 females), 185 non-autistic parents of Autists (35 males, 150 females), and a control group of 267 people with no autism and no psychiatric history (193 males, 74 females)—the study found that Autists had a higher motivation to pursue interests than non-autistic parents or controls.

The highest particular motivations were intrinsic and associated with “positive affect”—in other words, we pursue our interests because it makes us happy. This is one of the best, most accurate scientific studies of an Autistic trait I’ve ever seen. That’s exactly why we pursue strong interests -- it is inherently satisfying and fulfilling to us.

While some intense interests can lead to satisfying careers, it’s important that our interests not be considered valid or valued according to monetary measures. I see so much emphasis placed on turning intense interests into a career; just last week on Twitter many Autistic adults were debating with a therapist who had said that no Autistic child should be permitted to pursue any intense interest that would not lead to a career.

A valid argument the Autistic adults were making was that you can’t predict whether an interest would lead to a career or not—some do and some don’t. Some topics that seem ill-suited for vocational purposes lead to a life’s calling, while some rather mainstream interests like math or history have not turned into a career for the Autists who intensely pursued them.

But setting that argument aside for the moment, how can it be good for a child to forbid them to pursue an intense interest that is bringing them deep joy and feelings of self-worth and satisfaction? Yes, of course children (and adults!) cannot spend every waking moment pursuing an interest to the exclusion of all other activities. But the therapist with whom we debated talked about preventing all non-vocational interests.

Do we insist that non-autistic children cannot watch their favorite cartoon because it is not likely to lead to a future career? Of course we don’t! Most parents will not allow their child to park in front of the television 24/7, but the thought of telling a child they cannot ever watch Steven Universe because it will not lead to a good career is absolutely ludicrous! Do not hold Autistic children to unrealistic standards their non-autistic peers are not held to.

But there is a more serious reason still why Autistic people of all ages should be encouraged to spend time pursuing their intense interests. (Yes, I said encouraged to pursue their interests, not merely permitted to pursue them.) Whether an Autist is deeply interested in calculus or crochet, plate tectonics or toilets, history or license plate numbers, astrophysics or plucking blades of grass, being encouraged to spend time with those interests is vital for preserving our mental health.

The Autistic members of our human family are in crisis. Anxiety and depression occur at alarmingly high rates, and our rates of suicidal thoughts, attempts, and completions are horrifying. Encouraging Autists to spend time with our intense interests is not enabling or coddling us. It is crucial to our well-being, happiness, thriving, growth, and -- overly-dramatic though it might sound to you -- keeping us alive. Whether it’s categorizing every leaf from every tree in the neighborhood or taking 127 photos of the cat doesn’t matter. What matters is that the interest is special to us, of our own choosing, and warmly encouraged. I am not being hyperbolic when I tell you this is a matter of life and death for us.

The Journal of Autism and Developmental Disorders published a study last month which found that being accepted (or not) was significantly correlated with levels of depression among Autistic people. Let me spell what that means out for you: not accepting an Autist’s intense interest directly contributes to their depression. Accepting and encouraging an Autistic person to be true to themselves is healing and healthy.

When the researchers ran multiple regression analyses of their data, they found that being pressured to “camouflage” Autistic traits also makes Autistic people depressed. This means that it is counterproductive and harmful to have the goal to make an Autistic person “indistinguishable from their peers,” because that is the sort of pressure that leads to the shockingly high suicide rates researchers keep finding whenever they study us.

Oh, and the acceptance that Autistics need in order to be happy? The study found that it must come from within as well as from without. It’s not enough for the world to accept us; we must accept ourselves. I’m here to tell you that it is a tough task, trying to accept myself when the world clearly does not accept me. Autism acceptance from within is so much easier when I meet acceptance from without.

Autism acceptance therefore does not mean valuing me and my interests because they could earn me money some day—it means valuing me and respecting what I value, because I am a worthy human being deserving of dignity and happiness. I work hard to build up my own sense of self-worth, and encourage other Autistic people to build up theirs as well. Imagine my heartbreak and anger a few days ago when a parent commented on my YouTube video supporting suicidal Autistics and encouraging them to develop tools of self-acceptance and told the world that their child’s life was pointless because she would never marry, hold a job, or live independently!

Don’t bother looking for the comment; I removed it. But I am still reeling from it. How could a parent think it was okay to say their child’s life was pointless? And how cruel does a person have to be to say such a thing on a resource meant to help keep suicidal people—people like their own child—alive and aiming toward happiness? Cruel seems too mild a word for it. It was an evil thing to say.

Your life is not pointless. Your child’s life is not pointless. It doesn’t matter whether a person marries or not. It doesn’t matter whether a person drives, holds a job, feeds themselves, gets dressed without prompting, or not. No one’s life is pointless!

As Jesse Jackson told my generation on Sesame Street, whether you are poor, young, on welfare, small, make mistakes, have different clothes, a different face, different hair, are black, brown, white, speak a different language—no matter who you are, you must be respected, protected, never rejected, because you are somebody.

So the next time you are tempted to tell an Autistic person their interest is silly, trivial, a waste of time, weird, or pointless, stop—and remember why we love what we love. We are somebody, too, and we must be respected, protected, and never rejected. Encourage our intense interests. And if you are Autistic, do not feel ashamed of or guilty about your intense interests.

We love what we love because we are who we are. And that is a beautiful thing.


*While the standard term for these deeply satisfying interests is “special interest,” I only use that phrase when I’m quoting someone else. It’s a point on which I differ with a large number of Autists, but I don’t like the term “special interest” (often abbreviated as “SI”.) I feel like it belongs in the bin with similar terms like “special needs” and “special education.” As the Down Syndrome community’s public service campaign reminds us, our needs are not special.

I would argue that the only thing “special” about our interests is their meaning to us; our interests are special to us.

I don’t call them “special interests” because we don’t say Bob Ross’ interest in painting was “special” or that Dr. Richard Feynman had a “special interest” in teaching. Being passionately consumed with a topic is a positive trait and I feel like calling it “special” just because the person being passionately consumed is Autistic is unnecessarily “othering.” Autism is a difference in intensity and frequency of traits found in non-Autistic people as well.

However, many Autists do embrace this language and love calling their passions “special interests” and I do not fault them for it. If you are not Autistic and are interacting with someone who is Autistic you should always follow their lead as far as what language they would like their identity and experience to be framed in.

Monday, November 13, 2017

Coping with a Crisis When You Have Unreliable or Intermittent Speech

Maxfield Sparrow

Cornerstone Breakdown Club
Photo © Marcia Furman | Flickr/Creative Commons
[image: White person with tousled medium brown hair slumped over at a restaurant table,
face hidden, with sunglasses resting on the top of their head and hair.]

Autistic people already know how alarming and overwhelming a crisis can be. But when we have unreliable and intermittent speech, a crisis can go beyond stressful, even becoming deadly. I’d like to share a few tips on how I’ve managed to stay alive despite intermittent speech.

  • What is unreliable and intermittent speech?
  • People With unreliable and intermittent speech can help others in emergencies
  • What to do when you are in a crisis and need to contact someone 
    • Text someone you know or a professional helper
    • Use TTY/Relay to contact someone
    • Use an AAC over the telephone
    • Use the Text Crisis Line
  • How to interact with others during a crisis
    • Decide whether and how to disclose your autism
    • Communicating With Others
      • Use an AAC device or app
      • Use sign language
      • Use a white board
      • Use the emergency chat app
  • How to remember these options in a crisis
    • Make a folder on your phone or tablet
    • Add the crisis text line to your contact list
    • Make a reminder image on your lock screen or background
    • Make a personal checklist to troubleshoot problems

What is Unreliable and Intermittent Speech?

First, a bit of explanation for those unfamiliar with these terms. People sometimes talk about Autistic people as “verbal” or “nonverbal” but there are a couple of reasons why I don’t embrace that language. One big reason is that “verbal” means “of words” rather than “of speech.”  I know plenty of Autistics who don’t speak at all but type with beautifully expressive, often highly poetic, language. To call someone who writes more lyrically than 99% of the population “nonverbal” is so incorrect. To call anyone at all who types or writes or points or otherwise uses language to communicate “nonverbal” is so insulting.

An even bigger reason why I don’t use the language of verbal/nonverbal is because it implies that speech is like a light switch: either on or off. Many of us do not fit into that on/off model at all.

Unreliable speech is when a person can speak but the words do not always match what the person is trying to say.

One example of unreliable speech comes from Emma Zurcher-Long’s blog, Emma’s Hope Book. Emma calls fireworks “motorcycle bubbles” and stars “sorry bubbles” which is lovely and poetic (if cryptic to those who don’t know Emma’s language.)

But her speech becomes unreliable in certain situations, particularly with multiple choice questions. Emma’s mother wrote a blog entry about Emma struggling with a standardized assessment test. “I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud. This is how the test is typically done. Emma chose the last choice to each question every single time,” Ariane writes.

Imagine a crisis situation with a person who can only repeat the last option given. “Do you want to tell me what you are doing here or do you want to go to jail?” “Go to jail.”

Intermittent speech is when a person can speak sometimes but is unable to speak at other times. Sometimes the inability to speak is due to illness or stress (conditions often present during a crisis!) and sometimes speech comes and goes but no one knows why. Sometimes even the person with intermittent speech does not know why they cannot speak sometimes.

I have intermittent speech and that’s why I can share tips with you: I have lived experience with being in crisis situations without the ability to speak. Sometimes people are surprised that I cannot speak because they have heard me speak very well before that moment when I cannot speak. Sometimes people do not believe that I am unable to speak because I can speak so fluently at other times.

It is important to believe people when they are unable to speak. I know college professors and graduate students who are able to teach classes, using their voice to speak, but sometimes cannot utter a single word. When we are unable to speak it might indicate that something is terribly wrong, but that is not always the case.

For example, Alyssa Hillary is a graduate student with echolalia and intermittent speech. They write about interacting with the other members of their college Ultimate Frisbee Team, “It took some time for them to figure out that I really do understand when I should say a thing and what I should say, I'm just not always capable of doing so (it took until I managed to explain this, which it doesn't occur to me to do except right after this happens- you know, while I'm probably still not able to speak?”

People with unreliable and intermittent speech are clearly not “nonverbal” or even “non-speaking,” so we need to have language for how speech shows up in our lives.

People With Unreliable and Intermittent Speech Can Help Others in Emergencies

Just because we can’t always communicate with our voices doesn’t mean we can’t help people get help during emergencies. I have found that it can be easier to help others in crisis than to help myself because I am much calmer if it is someone else’s emergency. I might go into a meltdown because I can’t find the can opener but I was completely calm and knew exactly what to do to help when I witness a car crash right in front of me while I was waiting for the bus.

Aaron Cahal, who has unreliable speech, was able to use Facebook to save the life of a drowning child. First Aaron texted his dad, “I hear a scary cry.” Aaron’s dad started looking for Aaron, not realizing his 23-year-old son had already left the house and was moving toward the sound. Aaron took pictures of the house where he heard the sounds from and then messaged local police through their Facebook account, writing, “big crying people scary people.”

While emergency responders weren’t sure at first where to send help, they took Aaron’s message seriously. Someone else pulled the child out of the water and began administering CPR, but emergency vehicles were able to arrive quickly because of Aaron’s alert. Aaron Cahill’s story shows the importance of cell phones for those of us with unreliable and intermittent speech. We can save the lives of ourselves and others if we have a way to communicate. Cell phones are marvelous technology and very helpful assistive devices.

What to Do When You Are in a Crisis and Need to Contact Someone

The standard advice for coping with a crisis is to call 911 or a crisis hotline. Both of these seem impossible if you can’t use your voice. Here are some options:

Text a Friend, Family Member, or Professional

Just as Aaron did in the story above, your problem might be best addressed by texting or otherwise messaging a person in your life who can help you or contacting the authorities through text or Facebook.

Some people don’t like to get the police involved in crisis situations, especially sensitive situations like potential suicide. If you are interested in other options besides contacting the police, you will want to read What to Do Instead of Calling the Police.

Use Technology Developed for Deaf People

One of the mandates of the ADA (Americans with Disabilities Act) was making the phone system accessible to Deaf and Hard of Hearing people. This access has primarily been provided through TTY and Relay calls.

TTY means teletypewriter. That is a piece of machinery that is rarely used today but the word has stuck around, just like you will hear older people talk about “taping” a show even though they are doing it digitally. Back in the late 1980s when I met my first Deaf friends, their TTY was a clunky, heavy machine that never left their dorm room. Relay calls are calls made using a special service that takes your TTY typing and speaks it out loud to a person on the phone, then types their answers back to you.

I used to have a friend who taught me that Autistic people are allowed to use TTY/Relay technology even if we aren't Deaf. The system is free to use. It's been six years since the friend said anything about the technology they were using, but they had a free account with NexTalk. They said it took some time to get a number and activate it, but once that was done, they could make and take outgoing and incoming TTY calls on their computer with no problem.

I note on the NexTalk site that they intend to provide Apple/Android access to NexTalk in the future although it is not currently available. Many smart phones have TTY services built into them now, however.

For example, Apple iPhones running iOS 10 or later have built-in TTY which you can turn on by going to settings > general > accessibility > tty. You can use 711  to access Relay services. To access TTY on other types of smart phones, Google your phone, read the manual, or consult with the store where you bought your phone.

If you’re buying a new cell phone and want to make sure you can use TTY/Relay on it, look for the TTY symbol:

[image description: a graphic depicting an old-fashioned 
telephone handset resting on a computer keyboard.]

Use a Text-to-Speech Device on a Regular Phone Line

A TTS or text-to-speech device is a form of Alternative and Augmented Communication (AAC) that synthesizes a voice and reads written text in that voice. Most people are familiar with physicist Stephen Hawking’s TTS voice. Another well-known synthesized voice is Apple’s Siri.

In the past, TTS was expensive and required carrying around a heavy machine. Cell phones and tablet devices have made TTS lightweight and much more affordable.

My friend Cal Montgomery was recently trapped in a Chicago train station and tried to use a TTS to get help. Metra Emergency Services hung up on him every time he called. This is one of the biggest drawbacks of having a “machine voice” to speak through. In person, someone can see that you are using a device to speak. While people won’t always be patient or observe proper etiquette, they tend to listen. But over the telephone, people get impatient and assume you are a computerized telemarketer or worse.

Cal’s story is helpful because he explains his step-by-step problem-solving process as he is going through it. He uses multiple methods to try to contact people who can help him. While his TTS doesn’t yield good results and flagging down trains doesn’t get useful results, he is also able to get someone to show up by using the police call box. He even brings the firefighters into the situation to help. Eventually someone figures out that the elevator was turned off.  Once the elevator got turned back on, he was able to leave the train station. The situation was a major fail on the part of Chicago Metra, but a great case study in communication problem solving.

I have two different AAC apps that are my favorites. On my iPad mini I use an app called Verbally that allows me to type words in regularly and pre-program frequently used phrases. On my cell phone I use Speak It! These are both Apple OS apps. If you are looking for an AAC app to use on your tablet or smartphone, Practical AAC has a great information resource.

Use the Text Crisis Line

There is a text-only crisis line for those of us who can’t or don’t want to seek help in a crisis using our voices. The way it works is to text “HOME” to 741-741. A real person will respond and help you with your crisis.

It can take five minutes or more for a person to get on the line with you, so if you have a crisis that you know requires a call to 911, you may want to try a different route first, like a TTY/Relay call to 911 or texting a person you know who can call 911 for you. The text crisis line might also be a useful place to find someone to call 911 for you, if that’s what you need in the moment.

If you’re anxious, depressed, suicidal, and so on, the text-only crisis line may be exactly what you need. It’s primary purpose is for managing painful emotions. It’s not a long-term solution and the people staffing the line are only trained to get you from a “hot” moment to a “cool” moment, but many times that’s exactly what a person needs.

How to Interact With Others During a Crisis

So far, I’ve covered ways to get hold of people who aren’t right there with you. Now let’s talk about some useful ways to interact with people who are on the scene and might be able to help you with your crisis.

Identifying Yourself as Autistic

Sometimes you need a quick and easy way to let someone know that you are Autistic. A medical ID card can be very useful. Unlike other options like registries, you can choose when to disclose or not by handing your ID card to someone, or keeping it to yourself.

There are many available ID cards to choose from. You can also design one yourself to meet your personal needs. ID cards can be on cardstock, like business cards, or they can be on plastic, like a credit card.

One way to use an autism ID card is to hand it along with your regular ID card when someone asks for your ID. This is especially useful if you are being questioned by a police officer and feel that knowledge of your autism will help the police officer make better decisions about the encounter.

The ID card I use was made by the Disability Independence Group. Their website includes a helpful video about how to use an autism ID card when interacting with the police. I highly recommend watching the video even if you choose a different card or no card at all. The video is geared mainly toward those with full speech. There is one person in the video with intermittent speech but she may have more speech ability than you do.

Still, she models showing her identification card which is something you could do without speaking, especially if you have the card already out so you don’t have to reach into a pocket to get it. If you frequently have problems with being stopped by police (as many of us do!) you might try putting an autism disclosure card in a privacy sleeve on a lanyard to make it easier to give it to a police officer without speaking while not appearing threatening the way you would if you suddenly reached into a pocket or bag without saying anything.

Some other helpful cards include Autistic Hoya’s Disclosure Cards, Autism ID cards sold by the city of Pittsburgh , or the ICE4Autism  phone app, which I also have installed on my iPad mini.

Communicating With Others

In addition to an AAC device, which is covered above in the section about using a text-to-speech device to communicate on the telephone, some options for communicating with people in person during a crisis include:

Using Sign Language

If you are able to learn sign language and this form of communication works for you during moments of stress, you may want to devote some time to it. Most people do not understand sign language itself, but most people do understand what it is. While sign language is less universal than written text or words spoken by a synthesized voice, it has the advantage of being a method of communication most people can relate to and are willing to try to work with, or find you someone who can work with it.

I am not fluent in sign language, but I’ve learned enough of it to be understood during a crisis situation if I have no other way to communicate with people. I once had a problem with a hospital emergency room claiming they couldn’t provide an interpreter at 3:00 AM, but another patient in the emergency room immediately took them to task, claiming to be a lawyer. It was amazing how quickly the hospital woke someone up who could help me be understood.

Using a White Board

I’ve only used a white board when communicating with police officers who came to my home during a situation, but it worked well enough to protect me from harm. Using a notebook or other paper would also work, but I have dysgraphia and have found that writing on a white board is much easier for me than writing on paper.

My white board is small enough that I have brought it along with me on my travels because it slides easily into a bag. It might not be an optimal solution for you or it might be perfect for your needs. Either way, if you are able to use a white board you might want to keep one around just in case. I have found that it’s a good idea to keep multiple means of communication available to me because I never know when I might need something different. If the battery on my phone is dead, a white board could save me.

Using the Emergency Chat App

Jeroen De Busser designed an Emergency Chat app for Apple and Android. He is Autistic and designed what he knew would help him in situations where he was unable to use his voice or ears to communicate with others.

When you open the app, you see a default screen that explains your situation. This screen can be customized and here’s what I’ve written for mine:

[image description: a screen that says: I need help.
I gave you my phone because I can’t use or process speech right now,
but I am still capable of text communication.
My hearing and tactile senses are extremely sensitive in this state
so please refrain from touching me. Please keep calm, and proceed
to the next screen that has a simple chat client through
which we can communicate. Continue.]

You might notice that I used very formal language in my description. I did that on purpose because I’ve found that people often treat me poorly when I’m unable to speak. I intentionally used my best language in the description to help set the tone for any typed conversation that follows. You may consider doing the same: use your words, but use your best words. Think of it like putting on a suit or nice dress in order to put forth the best impression you can.

People who don’t know us can sometimes treat us as lesser when they realize we can’t speak. Trying to make our best impression possible can help keep us alive and free and help us get our needs met. I wish this weren’t the case, but it is, so we need to do whatever we can to protect ourselves until the world learns that not being able to make speech does not  mean anything about who we are as human beings.

When the person you’ve handed your phone or tablet to clicks on “Continue” a chat screen will come up. You and the person you’re communicating with can type back and forth to one another just as if you were sending texts to each other.

[image description: a chat screen with a back and forth conversation that reads:
This is what the app looks like in use. You can hand the phone back and forth
to type messages. And it’s just like a text chat, but in person.]

How to Remember These Options in a Crisis

I have a few things set up on my phone to help me remember that some of these options are available to me.

Make a Folder on Your Phone or Tablet

One thing I’ve done is set up a folder on my phone, named “crisis help” with a link to the webpage for the crisis text and my AAC and in-person text app. Putting all my crisis tools together in a single folder makes it easier for me to access them when I need them most.

Add The Crisis Text Line to Your Contact List

Another thing I’ve done is to add the crisis text line to my phone contact list. I added it by setting the first name as “Crisis Text Line” and the last name as “AAAAA Text HOME to Start”. That way it shows up at the very top of my contact list so it’s easy to find and “staring right at me” when I open my contact list to decide who I should text. If I’m not in crisis, I can look through my contacts and find someone else. If I am in crisis, I’m grateful to find help right there on top.

[image description: Maxfield Sparrow’s contact list, with the
Crisis Text Line at the very top of the list. The rest of Max’s
contacts have been blacked out to protect their privacy.]

Make a Reminder Image on Your Lock Screen or Background

Another way to remind yourself what to do in a crisis is to create a lock screen and/or background screen for your phone or tablet with words to remind yourself what options are available so that you don’t have to count on being able to remember what you can do when things get intense.

You can create an image or text file with step-by-step instructions or a checklist to help you decide what to do and use your lock/background screen to remind you to look at your list.

Make a Personal Checklist to Troubleshoot Problems

If you often find yourself distressed but unsure why, you might want to make a personal checklist when you are feeling good.  The list can help you work through what might be bothering you. Start with the most serious issues you might be facing.

For example, a personal checklist for me would start with: Have you checked your blood sugar? I have diabetes and a very low or very high blood sugar affects me emotionally and cognitively so it might be the root of my distress. Blood sugar disruption could kill me so it belongs on the top of my personal checklist, above questions like: Are you too hot or too cold? Or: Did you drink enough water today? Both temperature and dehydration are things I struggle to maintain and both can cause me to be very irritable or stressed out, but since blood sugar variations can kill me more quickly than overheating or dehydration, it goes higher on my personal checklist.

Only you can know what should be on your checklist, but the interactive self-care guide can help you decide what sort of things you want to put on your list and what order you want your checklist to have.


Despite how long this article is, it’s really just a basic overview of ways to find help, ask for help, and help yourself. Self advocacy and self care are important skills that everyone should continue to work to develop throughout the course of their entire life. We can never have too much skill when it comes to taking care of ourselves and reaching out to the people who can help us take care of ourselves.

Be well, stay safe, and take care of yourself. The world needs you, the people in your life need you, but most importantly of all, you need you. I hope these tips have been helpful to you and may you always find your calm in the midst of all of life’s storms.

Wednesday, November 8, 2017

Labels Are Valuable Tools

Maxfield Sparrow

There's something that kind-hearted and well-meaning people say that can hurt. And it usually goes like this:

"Let's go around the circle and introduce ourselves."

"Hi, my name is Max. I'm a writer, artist, musician, and public speaker. I live in a van with my cat, Fermat, and I am Autistic."

"Oh, Max, I don't think you should call yourself autistic. Labels are for soup cans, not people! You're such a sweet, intelligent man. You don't need to use that label on yourself any more. We all accept you here. You're just like us and seem totally normal to us. Don't label yourself."

[Image description: A bowl of alphabet soup with the word "Autistic" made of alphabet noodles floating in it.]
The person who says "Don't label yourself" is trying to be progressive and enlightened and kind and accepting. It is so hard to tell them that they are hurting me, because their words so obviously come from a place of love. But those words also come from a place of fear and misunderstanding, so it is only by explaining why telling me not to label myself hurts me, that I can help others to perfect that love they are trying to express:

In my opinion, labels are valuable tools.

Labels help us to find other people with whom we resonate. How many dating sites would people bother with if you couldn't use labels to tell prospective dates that you identify as: male, female, (on more enlightened sites, there are more gender options), Jewish, Neopagan, Christian, atheist, agnostic, Muslim, Buddhist, etc.; African-American, White, Asian, Native American, etc.;. smoker, non-smoker, and so on. Those labels are crucial if people are to find dates with the sort of people who "ring their bell," and so they can try to form intimate partnerships with them. Imagine trying to find a date on a site where all the people were just randomly jumbled together.

Labels help us to find groups with which we click. I wouldn't have studied Morse code if I weren't able to label myself as a ham radio operator and find other people who also call themselves hams. I would have missed out on a lot of great friendships if people from the Rainbow Family refused to use labels and didn't call themselves Rainbows. People use labels all the time when they are seeking groups with which to associate.

Labels help us to understand ourselves better. Yes, they are a sort of heuristic, meaning an imperfect, short-hand, and reductionist way to identify things that doesn't necessarily encapsulate the entirety of who and what a person is—but they are so useful. A woman who notices her stomach getting bigger and bigger is comforted by remembering that she is pregnant. Pregnant is a label. When I get frustrated that I have to slowly reason out people's words and actions, and cannot interpret them immediately and on-the-fly, it comforts me to remember that I am Autistic. Autistic is a label.

We've all heard someone say—either joking or seriously—"that's because I'm a man," or "I feel this way because I am transitioning," or "that's because I'm a woman," or "it's because I'm still a kid," or "come on, I'm a grown-up!" or any variety of these. Man, trans, woman, kid, grown-up—all labels. And all useful.

Abandoning labels is well-intentioned because it tries to seek to avoid harming others. But it can cause more harm than good. I view the drive to abandon labels as a close relative to person-first language, which also arose from good intentions, and which de-emphasizes labels out of respect for personhood (e.g., "person with autism"). Both seek to assert one's humanity in the face of something considered dehumanizing and horrible. But that's the problem: We don't find people insisting on person-first language for conditions considered positive or neutral, like being an artist, musician, male or female, etc.—people only get cranky about the "person living with Thingness" construction when being a Thing is assumed to be something terrible.

Likewise, people who say that people shouldn't be labeled ("labels are for soup cans, not people") have no problem with labels like "man," "woman," "artist," "musician," "writer," "Nobel Prize Winning Physicist," and so on. They only pull out their anti-label rhetoric when they are cringing about the particular label a person has been given, or has given to themselves.

Now, when that label is a genuine pejorative someone else is using to restrict or hurt a person, it's great to fight labels. Many people reading this have fought hard to wipe out the R-word, and I love you all for that! But when someone has embraced their label and is proud of it and feels that it conveys important information about their identity—like "Autistic," for example—it is a painful squashing of their identity to refuse to accept their label.

When we don’t allow people to label themselves, we are denying their autonomy. We are saying they don’t have the right to decide who they are and present that self to the world. We are treating them like little children who don’t know any better.

In some ways, it's even worse than person-first language. Person-first language says "I want to separate you and your autism and put you first to remind people that you are a human being because autism is such a terrible thing that they might forget you are human if I don't linguistically separate it from you." Anti-labeling says, "I want to deny the existence of your autism altogether. It is inherently dehumanizing so I want to use language to pretend it out of existence entirely."

Closely related to the “labels are for soup cans” comment are the comments like, “don’t allow autism to define you.” But it doesn’t matter what I do or don’t allow—every cell of my body, from the genetic code in my DNA to the neurons in my brain are autistic. Autism defines me every bit as much as being human defines me. If you don’t think there’s anything wrong with my “allowing” being human to define me, then please don’t try to tell me I shouldn’t allow autism to define me.

If someone is being bullied with labels and definitions that other people are forcing on them, it is great to step in and stop it. But when someone trusts you enough to share a core piece of their identity with you, it is a slap in the face to tell them that labels are for soup cans, not people.

When you say something like that, you are trying to keep the soup and throw the can in the trash. I am Autistic and if you try to throw that in the trash with the soup cans, you are throwing me in the trash and it hurts. Enjoy my soup (I think it's tomato-basil soup. I hope you like it) and learn to accept my label without cringing because I love my label.

Autistic is who and what I am. Yes, it is a heuristic—I am so much more than that word. But if you reject that word, you are rejecting me.

Friday, November 3, 2017

Under a Double Rainbow: Autism and LGBTQIA+

Trans Solidarity Rally and March 55436
Photo © Ted Eytan | Creative Commons/Flickr
[image: Multiracial crowd rallying with flags and signs behind a banner reading
"Trans Solidarity against transphobia for justice".]

Maxfield Sparrow

Ten years ago, I wanted to write a paper about autism and gender issues for a gender and sexuality conference at which I had previously presented. I started the research, then dropped into a depression after realizing how little material was available, and that the existing research about autism and gender was both dismal, and erasing. The medical journals talked about transgender autistic children as if their gender issues were delusions, mere symptoms of their autism. I never wrote that paper.

Today, not only is there good autism information available, but the “double rainbow” of being both autistic and LGBTQIA+* is just beginning to be more accepted and understood. We have a long way to go, but people are beginning to understand that autism does not guarantee asexuality, nor are Autistic people’s identities always heterosexual and cisgender**.

In fact, there’s even an organization, Twainbow, started by Louis Molnár in 2015. Molnár was diagnosed with Asperger’s in 2013, and noticed both the dearth of resources for “double rainbow” people, and the similarities between coming out of the closet as a gay man and coming out of the closet as Autistic. Writing in The Advocate, Molnár said,
“For many decades the blame was on just about anything from poor parenting to vaccines. Homosexuals were subjected to behavioral conversion therapy, shock therapy, injections, beatings, removal from imaginary catalysts, and social shaming to drive the gay out of them. These very things currently happen in the autism world.”
Steve Silberman, author of the autism and neurodiversity history best-seller NeuroTribes, spoke about Twainbow, saying, “Any organisation that fights for the civil rights of LGBT+ folks on the spectrum, raises awareness of the special challenges and joys of living under the double rainbow, promotes pride and self-confidence, builds alliances, and condemns bullying, systemic ableism [i.e., the discrimination of people with disabilities] and homophobia is doing really important work.” Silberman is right: acknowledging, understanding, and supporting our “double rainbows” is a crucial part of autism acceptance and raising Autistic children to be happy, healthy, fulfilled Autistic adults.

If you are an Autistic person who lives under the double rainbow, rejoice! You are not alone! Molnár estimates that over five million people world-wide are “double rainbows.” I would not be surprised to learn that Molnár’s estimate is far lower than the reality. Last year, I did a literature review and analysis of the research on autism and gender variance, and discovered that people who were surveyed at gender clinics were ten times more likely to be diagnosed or diagnosable with autism, compared to the general population. Additionally, Autistic people are seven times more likely to be gender variant than the general population. And those figures are just for gender issues, independent of sexual orientations.

If you are a parent of an Autistic person who is or might be a double rainbow, you may be concerned. Either you are worried for your child or you are worried for yourself (or both.) You might worry that your child is already facing so much stigma and discrimination due to being Autistic and a non-mainstream sexuality or gender will make life that much harder for them. You also might be struggling with worries about attitudes from extended family or from those in your family’s religion. You also might be worrying about your ability to parent a child who has “fallen so far from the tree.” If you aren’t Autistic and you are heterosexual and cisgender, you might worry about your ability to support and mentor a child whose life experiences are so very different from your own.

When it comes to fears of stigma and ostracism from society, family, school, church, and more, I recommend finding other parents in your situation to share hopes and fears, tips, and ideas. While there are not yet many organizations supporting double rainbows and our families, if you are in the United States, you can meet other parents of LGBTQIA+ children at your local chapter of PFLAG (Parents and Friends of Lesbians and Gays). Of course those parents may not be familiar with the needs of double rainbows like your child, but they are great people to talk with about issues of rights, safety, stigma, and more.

Some other organizations that might be helpful to you and your child include True Colors, GLSEN, and Queerability in the U.S.; Stonewall, Mermaids, and Gendered Intelligence in the UK; and Minus18 in Australia.

Some other important things to remember as the parent of a double rainbow or potential double rainbow:

  • Be open to listening to your child, even when the topics get difficult. LGBTQIA+ interests might indicate something about your child’s identity...or not. Listen without judgment, and let your child lead the way with the conversation. Ask questions that show your interest but try not to jump to assumptions about your child either way.
  • Be ready to hear some challenging language. Your child might use words that make you uncomfortable like “queer” or even words that are considered slurs among some people, like “faggot,” “dyke,” or “tranny.” If your child identifies with a challenging word, ask if you should also use that word or if your child wants you to use a different word. Sometimes minority groups reclaim language for their own use but do not want people who are not a member of that minority to use those words. Even if the words make you uncomfortable, strive to keep any sense of judgment out of your questions and comments.
  • Your child may need gender or sexuality support at school. This could include a gender neutral bathroom to use, uniform change or discussion of clothing changes, social stories about gender and/or sexuality roles and issues, staff training, and more. Joe Butler goes into more detail on some of these points in the article Supporting Trans and Gender Questioning Autistic Pupils.
  • Seek peer support and double rainbow mentorship if possible. In addition to some of the regional organizations listed above, some writers to look at include Caroline Narby and her Double Rainbow series; Dr. Dawn Prince-Hughes who writes in her memoirs about life as an Autistic lesbian; John Scott Holman, a now-deceased gay Autistic man who wrote frankly about his struggles with addiction as well as the challenges and joys of being a double rainbow; Lydia X. Z. Brown, a genderqueer activist and law student; Wenn Lawson, who wrote for years about life as an Autistic lesbian before coming out transgender.   
  • Be prepared to learn. You might not be aware, for example, that some transgender people are non-binary, meaning they do not identify as either male or female. Some transgender people do not seek to medically transition their bodies. Some people have a different identity for their sexuality and their romantic interests, leading to combinations like “asexual homoromantic.” If you’ve never learned about much beyond gay/lesbian/straight/transgender, be prepared to be a little overwhelmed by the information and options out there. You’ll need at least a surface understanding in order to help your child navigate to an understanding of where they stand in all the gender, sexuality, and relational spectrums.
  • You don’t need to be told this, but I’m rounding out the tips with it anyway because it’s so important: love your child. You already know, having an Autistic child, that parenthood carries no guarantees of what sort of family you will end up building. Odds are, you didn’t expect an Autistic child, but you love them so much and would never erase them to try to get a non-autistic child instead. Take that love and acceptance with you when helping your child figure out their gender and sexuality. Maybe your child is cisgender and heterosexual. Maybe not. So many of us are LGBTQIA+ that you serve your child’s best interests by assuming they might turn out to be any of the identities represented in that acronym, just in case they do. If your child turns out to be a double rainbow (or even a triple rainbow like me: Autistic, Transgender, and Gay) you’ll want to be ready to be there for them, offering the same love and guidance you’ve offered through every other facet of their beautiful life.

*LGBTQIA+ is an acronym meaning lesbian, gay, bisexual, transgender, queer, intersex, asexual, and others not specifically named, leaving room for increased future understanding of non-mainstream gender and sexual identities

** Cisgender or 'cis' is a word that means identifying with the gender a person was presumed to be when they were born, and people looked at their genitals then declared with excitement, “it’s a boy!,” or “it’s a girl!” If that presumption turns out to be what the baby grows up to feel comfortable with, then that person is cisgender rather than transgender.

Friday, October 20, 2017

The Best Bar Mitzvah Boy

Todd Drezner

Dov and Sam | Photo © Brad Alpernin
[image: Two white Jewish pre-teen boys, wearing suit jackets and ties
at their Bar Mitzvah service, posing together and smiling for the camera.]  
We told our son Sam that there is no applause at Bar Mitzvah services. But when he finished his speech, a wave of clapping and cheering burst forth from the crowd—a genuine display of emotion that no religious custom could have stopped.

There was a lot of feeling behind that applause. Love, certainly. Appreciation of a job well done. But also amazement. It’s probably safe to say that not everyone in attendance had expected to see what they’d just seen. And here is where the story gets interesting.

But first some background. A Jewish boy becomes a Bar Mitzvah when he turns 13 (a Jewish girl becomes a Bat Mitzvah). Traditionally, the Bar Mitzvah leads a Shabbat (Sabbath) service, the heart of which is when he chants from the Torah (one of the five books of the Old Testament).

As anyone who’s ever done it can tell you, reading from the Torah is tricky, even if you’re fluent in Hebrew. Unlike standard written Hebrew, the Hebrew of the Torah has no vowels. Without them, you can’t know simply by looking at the words how they’re pronounced, or in some cases what words they are. Thus, the only way for a 13-year-old to “read” the Torah is really to memorize it.

But even if you’ve done that, you’re still not done. Because the Torah is not just read, but rather chanted using a complicated melody with origins going back centuries. Again, the best way to do it is to memorize it. And it helps if you can sing.

If you were to design a kid with the characteristics needed to perform well under these circumstances, you would probably wind up with someone very much like Sam. He can recite entire Pixar movies from memory, along with various Kristen Wiig sketches, iPad puppet shows of his own creation, and conversations that happened years ago. Five minutes of Torah was a breeze.

Then, too, Sam has perfect pitch and is a great mimic: he can even match pitch with our bathroom fan and tell when it’s malfunctioning. Once he heard the Torah portion chanted correctly, he was able to chant it note-perfectly.

So my wife and I were confident that when it came to the heart of the Shabbat service, Sam would be in good shape. But still, it would not necessarily be easy. Sam had no real experience speaking in front of a large group. He has significant anxiety. His focus and attention can wander easily, and it wasn’t clear how well he could maintain his concentration over a 90-minute service.

But my wife and I knew that when we set a goal for Sam—or he set one for himself—he could achieve it as long as he had the necessary support. The key was to start early, and to find people who could help Sam learn what we knew he could learn.

Fortunately, there were lots of people who could help.  Most important was the fact that Sam would share the service with his cousin Dov, who lives with my sister and her husband a mile away from us in Brooklyn. From the time they were toddlers, my typically-developing nephew was a bit of a Sam Whisperer. When they were two, he would look over at Sam in his car seat, turn back to us, and say matter of factly, “Sam’s not talkin'.”

And ever since then, Dov has been exquisitely sensitive to Sam, knowing not only when talking was too much, but also how to draw Sam out of himself and into the world. Having Dov co-lead the service meant that Sam wouldn’t have to do everything. More important, there would be someone there whom Sam loved and trusted, and who could gently direct his attention to where it needed to be. Of course, my nephew had his own Torah portion to learn and speech to give, but the kid is talented. And he had backup from his younger sister, Sam’s other cousin, who’s also deeply practiced in the ways of Sam, and was sitting in the front row. They were our aces in the hole.

So we were confident Sam could do his part to lead the service. But would it mean anything to him? With all the logistics that come with raising an autistic kid—finding the right school, setting up therapy appointments and swim lessons, building a community that would love and support Sam as he is—we had neglected the small matter of providing Sam with a formal religious education.  We observed major Jewish holidays and occasionally went to synagogue, but to the extent that Judaism is the story of a people, it was a story Sam didn’t know.

Fortunately, a member of our synagogue had a lot of experience providing Bar Mitzvah tutoring to kids with disabilities. We went out for coffee with him. “A lot of parents tell me they don’t think their kid will be able to do it,” he told us. Knowing a set-up when I heard one, I joked, “I don’t think our kid will be able to do it.”

But, as we already knew, he could. Sam and his tutor started meeting in March of 2015, a full two-and-a-half years before the scheduled Bar Mitzvah service. Together, using unusual combinations of action figures from Frozen, Monsters Inc., and The Incredibles, they acted out stories from the Bible, a process they would use to make their way through most of the Old Testament by the time of the service. Sam is not a rabbinical scholar, but he now knows his Abrahams, Isaacs, & Jacobs, and his Sarahs, Rebeccas, Rachels, & Leahs.

And the tutor started teaching him Hebrew. Sam picked it up with the same hyperlexic ability that had him reading English at three years old. We were just about set.

The last element of the service was perhaps the most challenging. A Bar Mitzvah gives a “D’Var Torah,” a speech in which he’s supposed to offer an interpretation of his Torah portion. Because of Sam’s language processing delays, he would have trouble understanding his portion. And writing did not come easily to him.

Together with our rabbi, we decided that Sam would offer a few basic thoughts about his Torah portion, but would spend the bulk of his speech focusing on what he loved about his family members who were there to support him.

Though we helped him a bit with the writing and the organization of the speech, the thoughts were Sam's. We often remind others that although Sam presents as a younger child because of his language processing delays, he has as full a personality and thinking as complex as any other young teenager’s. We worked with him to help shape the thoughts we already knew were there. He spoke in an Irish accent and a French accent, to mimic characters that his beloved uncle created for him. He told his cousin that he’s loved him for as long as he can remember, “And I can remember a lot.” When he listed the reasons why he loves me, he started with, “Daddy, you do my laundry.”

Sometimes, he didn’t realize how funny he was being. (I think he’s honestly very happy that I do his laundry.) But for our guests, who had already seen him chant his Torah portion and were now laughing at every line, he was a revelation. The applause washed over him like the climax of an after-school special.

What, exactly, was that applause for? Had they doubted him? In some ways, the reaction of our guests wasn’t a surprise. I have a large extended family, and when we’re together, it’s a bit overwhelming for Sam. He tends to withdraw in those situations, and so many of our guests had only seen him spend a lot of time pacing back and forth at the edges of various ballrooms. They were surprised to see him thriving as the center of attention. And even among our friends who had spent more time with Sam, the reaction tended toward amazement. Sam had outperformed expectations.

The fact is, very few people at the service understood Sam’s capabilities as well as my wife and I did. We always believed he would do well because we knew he was capable and had worked hard. But to our guests, it may have seemed like his performance came out of nowhere.

To some extent, this demonstrates the continuing thrall of the word “autism.” All of our friends and family know of our commitment to autism acceptance, and to a person, they support it. Indeed, many of them have been vital to helping us build a community that is welcoming to Sam. And yet, even having done so, they may have been surprised to see him excitedly greeting guests outside the synagogue. They may not have been prepared to see him seeking out eye contact with each person he mentioned in his speech. No one necessarily doubted an autistic person could lead a Bar Mitzvah service. But perhaps no one expected him to enjoy it so much.

As autism has become more common over the past 20-30 years, autistic people and their allies have tried to move beyond “awareness” to “acceptance.” But there’s still not a lot of talk about “joy.” Too often, there’s a misconception that acceptance means only accepting behaviors that are considered non-standard, or accepting that an autistic person may not hit the same milestones as a non-autistic one. Yet acceptance can lead to moments like Sam's Bar Mitzvah service.

Sam chanted from the Torah so well because of the strengths he derives, in part, from autism. He gave a speech about all the people he loves because they accept him as he is, rather than trying to change him. The end goal of acceptance isn’t a life that you trudge through pushing away your wish that your kid could be typical. Rather, the goal is to find the joy, and to celebrate your child, as he is.

Tuesday, October 10, 2017

Hard Truths: Disability and Poverty Go Hand in Hand

Maxfield Sparrow

Photo © *Hajee | Flickr/Creative Commons
[image: Person with black hair and a blue coat. They are holding a hand-lettered
cardboard sign over their face. Sign reads, "VERY HUNGRY PLEASE HELP!"]
I am not the only Disabled person economically struggling, as disability and poverty go hand in hand. Why is that? The answer is complex, since disability leads to poverty and poverty leads to disability. It's a vicious cycle and sometimes a downward spiral, leading people to lead lives perpetually circling the drain, always on the edge of annihilation.

Let me see if I can untangle some of it for you.

“You’re dooming yourself to a hand-to-mouth existence.”

That’s what my parents told me when I dropped out of high school. And they were right.

Well, they were half-right, anyway. I have spent the last three decades living hand to mouth, but it is not a fate that I brought upon myself. I am Autistic, but that is only part of the picture. I am multiply Disabled and the requirements and limitations of my various disabilities bounce off each other in difficult and sometimes devastating ways.

These cycles of disability and poverty can go all the way back to childhood. Starting life in poverty is an immediate disadvantage in life. That’s probably obvious, right? Less money often means poorer health coverage and poorer nutrition, which can cause additional health problems for the rest of a person’s life, even creating new disability where none was to start with.

A family without financial resources is not able to help their children launch into the world as successfully as a family that can afford to help young people with their start in life. Fewer resources mean less attention paid to mental health needs. A family with one or more disabled members will have additional costs. And expenses considered burdensome for a middle-class family can be the difference between life and death for a poor family.

A disability present from childhood can mean less access to a quality education; poverty also lowers access to such an education. Disability and poverty together can block a child’s future earning potential entirely. But the cycle of disability and poverty do not stop at childhood’s end. Nor does growing up in a middle-class home necessarily shelter a disabled adult from falling into and/or failing to climb out of poverty.

The poverty rate for disabled working-age adults in the United States is more than twice as high as for non-disabled adults in the same age range. A September 2009 Center for Economic and Poverty Research report on poverty and disability found that half of all adults who have experienced at least one year of poverty are disabled, two-thirds of those with longer periods of poverty have a disability, and people with disabilities are significantly more likely to experience homelessness, food insecurity, and inadequate health care when compared to non-disabled people with the same income.

How can it be that disabled people have more serious markers of poverty at the same income level as non-disabled people? Literally, our poverty is “more poor.” One reason is that we have higher needs than most non-disabled people. Some of us need medications or medical devices that are not covered by Medicaid or other insurance. Some of us require special diets that cost more. Some of us need apartments on the bottom floor, so we can access them, or on the top floor, to mitigate sensory sensitivities, and have to pay more for an accessible apartment (and “accessible” does not always mean the same thing from person to person, so many disabled people have access needs that are not well understood or supported, even by ADA laws meant to protect us),

A 2012 study, published by the National Disability Institute, found that 70% of people with disabilities said they “certainly or probably” could not come up with $2000 in an emergency while only 37% of people without disabilities said the same. Without a savings cushion, an annoyance becomes expensive, and an expense becomes deadly.

Not so long ago, I looked at my tax records and saw that I have a lifetime earning total of $17,358. Since that sum covers the years from 1985 through 2016, it averages to $542 per year. That’s not a lot of money.

How have I lived on an average of $542 per year? Some of that time was spent institutionalized. Much of it was spent homeless. I’ve eaten at soup kitchens and out of dumpsters. I’ve slept under bushes and in public bathrooms. I’ve escaped the heat of summer and the cold of winter in shopping malls and libraries—often even when I had a place to live, because when I have had a roof over my head, it’s often a roof that leaks. I’ve lived without heat, running water, or even panes of glass in the windows.

And much of that substandard housing was only made possible because I have been receiving Supplemental Security Income (SSI) for disability since 1994.

“So you shouldn’t have dropped out of high school,” you say. “You should work harder. You should get a better job. You should try harder. Give up that dream of supporting yourself through writing and go get a real job.”

Let me see if I can untangle some of that for you.

I was forced out of high school because no one was protecting me from severe bullying that included having rocks thrown at my head and bleach thrown on my clothes. I had books and papers stolen. Bullies slipped laxatives into my food, so I stopped eating or drinking at school. And I was pushed into isolated building niches where I was sexually molested.

This is why I am so stern about the incredible burden of bullying that Autistic students endure. Bullies stole my guaranteed education and my future earning potential from me. Bullies stole the life I might have had, and set me on this hand-to-mouth path, one I have been fighting for three decades to escape.

As I detailed in my book, The ABCs of Autism Acceptance, CBS reports that 63% of Autistic children have been bullied, and they are three times more likely to be bullied than children without autism. Time Magazine reports a 46% bullying rate for Autistic children and cites that figure as being nearly five times higher than non-autistic classmates. And the bullying Autistic students face is particularly brutal, including documented cases such as being covered in human excrement, choked and threatened with a knife, or having both hands blown off by explosives.

If we want to fight the life-long poverty so many Autists live with, we cannot ignore the role that abuse from both age peers and adults plays in setting us up for ongoing poverty, whether due to not completing our educations, or mental distress and complex PTSD from being targeted by bullies, or both.

Mental health issues are huge when it comes to keeping disabled people in poverty. Some people’s primary disability is psychiatric, while others develop psychiatric disabilities as a result of the poverty and isolation brought on by living with another disability in a society that does not adequately address the needs of disabled adults.

Those of us with developmental disabilities often have added cognitive burdens. For example, my executive dysfunction already makes it difficult for me to focus on a task. Once I am well into the task, I have strong abilities to hyperfocus—I wrote my book, No You Don’t: Essays from an Unstrange Mind, in just two weeks because I was finally living alone with no one to distract me from my work. But any distraction is fatal to my flow, and it can take me hours to get back on task.

My executive function worsens when I am sick or stressed out. Not having enough money to eat or pay my bills is incredibly stressful. That means that one of the factors that keeps me in poverty—my uneven energy and focus abilities—worsens with poverty, making me even more likely to remain in poverty once I find myself firmly wedged there. I am like a plane that keeps circling the runway because I can’t get enough power to take off and the circling is running through my fuel reserves, ensuring that my plane will never leave the tarmac.

Another disability I live with is Ehlers Danlos Syndrome (EDS), which is a connective tissue disorder that may turn out to be one of autism’s “genetic hitchhikers,” potentially occurring more often among us than in the general population. Anecdotally, a significant proportion of the Autists I know are also diagnosed with EDS or related syndromes. Having EDS has led to a range of seemingly unrelated health conditions. (Doctors have a saying, “if you can’t connect the issues, think connective tissues.”) Along with such “delights” as pelvic organ prolapse and intermittent gastroparesis, EDS has given me feet that shred and tear when I use them. After much expensive experimentation (and a lot of classes missed because my feet were so damaged I could only crawl), I found shoes that don’t damage my feet. They cost over $100 and need to be replaced every six months when I have walked holes through the soles. That’s $100 that has to come from a budget stretched so thin I regularly go days without food.

I count myself lucky, though. I know people with cerebral palsy who have to replace their shoes on a monthly basis because their gait destroys even the toughest shoes in a matter of weeks. And this is something that has to come from our budgets because Medicaid won’t pay for non-prescription clothing. And those of us living on Supplemental Social Security (SSI) are roughly 20% below the poverty threshold to start with.

The federal poverty threshold in the United States for a household of one is currently $12,060. That’s $1005 per month. Right now, I get $735 per month to live on, but starting in December the government will be holding back $73.50, leaving $661.50 per month because I earned $1229 from my writing last year—and that means I owe the government some of the SSI money it gave me. Social Security’s rules are set up to help disabled people transition from SSI to employment, but since I began writing I have learned that those rules are not as easy to live with for those trying to build their own business rather than stepping into traditional employment for others.

So why don’t I just go get a job? Yeah, I tried that. I tried it a lot. Before I finally got on SSI, I’d held 27 jobs and none of them for a full month. I work hard and learn quickly but I … well, employers have always been careful what they said when they fired me, but from what I gather, I kind of creep people out. I don’t smile at the right time. I do smile at the wrong time. I don’t respond to sudden, unexpected questions the way people expect people to respond. I’m too rule-bound (or, conversely, I break rules that “everyone knows” but were never explained to me).

My job pool was limited early on by a neurological disorder I was born with, called delayed sleep phase syndrome (DSPS). From a very early age, I had difficulty staying awake in the daytime, and was unable to sleep at night. But back then it was “diagnosed” as lazy and undisciplined. I never even knew I had a disorder until my thirties, when it shifted into a much more severe related disorder, hypernychthemeral syndrome (also known as non-24-hour sleep-wake syndrome or N24 for short) that shares many genetic markers with DSPS.

DSPS and N24 are also “genetic hitchhikers,” occurring much more frequently among Autists than in the general population. When I was exhausted or asleep in the daytime and wide awake at night, my job options were largely limited to restaurant and bar work, or night security guard.

Once I developed N24, my brain’s subjective “day” became longer than 24 hours, and my wakeful period began moving every day. Imagine if you had to go to work an hour earlier every day, until your 9 to 5 job went from a 9am start time to a 9pm start time in just a couple of weeks, and then continued to get earlier until you were arriving at work at 9am again ... but completely drained from weeks of little or no sleep. That’s what it feels like to try to function with N24.

That is why I cannot work for someone else. I can’t keep someone else’s hours because it’s as if my brain and body are living on Mars time while every employer out there has a timeclock programmed in Earth hours. Even Vocational Rehabilitation admitted that there was nothing they could do to help someone with my circadian rhythm disability.

I have estimated that Autistic people are three times more likely to have a sleep-related disorder than the general population. (I can’t cite a source for this, because I came at this number by combing through medical studies and running lots of calculations. It would take an entire paper all its own to show my work—and I might write that paper at some point.)

With an estimated prevalence of 1% in the general population and as much as 16% among adolescents (most of whom grow out of circadian disruptions by their mid twenties), Autistic rates of circadian disorders could range from 3% to as much as 48% (since many of the studies I analyzed were of youth and no one to date has studied lifespan prevalence of circadian disorders among Autists).

While I know many Autistics who have little or no circadian struggles, those of us who do experience these neurological sleep disruptions are destined to struggle with employment. Those of us with N24 tend to find employment altogether impossible. And, of course, not being able to work is a major contributor to poverty.

So it’s clear that there’s a problem with disability and poverty, but what are some solutions we can work toward?

  • Disabled people need mentors to help them navigate governmental systems. Many disabilities make it more difficult to fill out forms, make phone calls, travel to offices to meet in person, or even understand the complex legalese so much of the government information about benefits is written in. I’m not talking about payees or guardians but mentors—workers dedicated to helping disabled people to live more fully, with full agency and autonomy.
  • We need to raise the asset limits for people receiving benefits. Currently, SSI recipients are not allowed to have more than $2000 in assets. Yes, the ABLE Act increased that asset limit, but only for those with documentation of disability onset before age 26. That doesn’t help those with disabilities that occurred later in life, and it doesn’t help a lot of Autistics, even though we were born Autistic, because not all Autists can produce acceptable documentation.

    I wrestled for a while with the Social Security Administration (SSA), trying to get my benefits changed from SSI to SSDI-Adult Child. I qualify in every way, and have clear documentation of disability from age 17, but the SSA repeatedly refused to accept that my institutionalization —for the same disability I was later awarded SSI for—counts as evidence. I finally gave up the fight through sheer exhaustion. I could not find a lawyer to represent my case because I am poor, plus switching from SSI to SSDI would not create a back payment to pay the lawyer with.

    Because of that battle, I have not even bothered to see if I could get an ABLE account. (See my point above about Disabled people needing a mentor to help them navigate these shark-infested waters of government benefits.) I am assuming the answer would be “no.”
  • Reform the work rules to make it easier for Disabled people to earn money and eventually transition out of poverty.
  • Raise the SSI amount to the poverty threshold. It is scandalous that SSI recipients are expected to live in poverty, since the program is specifically designed for those who cannot work. The most recent report (2007) showed that only 19.5% of people on SSDI, and 12.6% of people on SSI, worked in that year. Only 2.9% of disability beneficiaries earned income at the poverty threshold or above in that year.
  • Support more job opportunities for disabled people. Work programs for Autistic people should not be limited to tech jobs, as those only target a narrow slice of the Autistic population. Encourage supported work in the community rather than sheltered workshops. Encourage programs for Autistics to start and build their own businesses. Support programs that offer legitimate opportunities for Autistics to work from home. Create mentorship programs to help Autistics who have never created a resume or CV, have never gone on a professional job interview, and are lost when it comes to the networking that is so crucial for many careers.
  • Support affordable housing for disabled people in the community that are not institutions or group homes.
  • Help eliminate “food deserts,” those communities where it is impossible or very difficult for those with limited mobility or transportation resources to access healthy food for reasonable prices.

The list of what we Autistics specifically and Disabled people in general need is overwhelming. And this is a bare bones list, just a starting point. What we really need is huge: a complete overhaul in how society views us.

Until we achieve that shift in social perspective, let’s start chipping away at the barriers. Write letters and make phone calls—not just to politicians, but to entrepreneurs and charitable organizations as well. Advocate for Disabled people’s unmet needs, and promote that social shift at the same time, as and how you can.

Stop people when they talk about “moochers” and “welfare leeches” because that kind of talk primarily hurts disabled people. Seventy-five percent of food stamp recipients are families with dependent children. Twenty-five percent of food stamp recipients are elderly or disabled. Allowing gripes about “people who don’t want to work” to go unanswered adds to the stigma that keeps disabled people in poverty.

We are counting on you to help. Disabled people can’t fight this battle—a fight for our lives!—alone.

Wednesday, October 4, 2017

Executive Functioning Problems: A Frustrating Aspect of Being Autistic

Finn Gardiner

Photo © Joseph Novak | Flickr/Creative Commons
[image: A Black office worker sitting in a chair in a cubicle,
surrounded by messy piles of newspaper and other papers.]
I don’t actually like messes. It’s just that my executive functioning problems cause me to generate them to my own—and others’—consternation. 

I consider my executive functioning difficulties one of the most disabling aspects of my being autistic. These struggles manifest themselves in a number of different ways, all of which are extremely frustrating. I’ve struggled with executive functioning since childhood, but I didn’t have the words to describe my experiences with it until I was an adult in my mid-twenties.

I have the hardest time with daily life tasks. For example, cleaning my room without direction or prompting is really difficult. It’s hard to turn the whole into parts, and once I’ve taken care of one part, I run out of energy to deal with the rest of the room. Trash bags accumulate in corners of my room because I keep forgetting to carry them down with me when I go downstairs. Plates, cups, and kitchen utensils lie on my dresser and bookshelves because I forget to put them in the dishwasher. It doesn’t help that I tend to perceive messes as part of the environment if they’ve been there too long.

Bills and paperwork lie on my bedroom floor. I’m terrible with paper. I pay all my bills electronically. It’s often the case that the only time my bedroom is spotless is when I’m ready to move out, and have the landlord do the final inspection so I can get my security deposit back. It’s easier for me to deal with common spaces in my apartment because my housemates and I chip in to cover a housekeeping service, but this is relatively recent. The housekeepers only deal with the kitchen, bathroom, dining room and living room anyway; I’m all on my own when it comes to my disaster area of a bedroom.

If I’m already drained and have exhausted my executive-functioning spoons for the day, it’s nearly impossible for me to cook a substantial dinner. I’ll end up ordering delivery instead. I like delivery every so often, but I feel like I’m spending more money on these orders than I’d like.

On top of that, I sometimes struggle with disordered binge-eating. I find it hard to start and stop activities as a general rule—I’ll get stuck in an activity and won’t be able to unstick myself for a while—and eating is no exception. I’m trying to be more mindful of my eating habits, but it’s taking quite a bit of time.

My executive functioning is questionable at any time of day, but it tends to be even worse before 10 AM. This is despite my using an alarm every morning to ensure that I get up on time. I’m usually awake when I’m supposed to be, but it’s difficult to “bring my systems online,” so to speak, until I’ve been awake for several hours. Morning classes and meetings are a wash for me much of the time, because I just don’t have the bandwidth to give my full attention, and it’s highly likely that I’ll be too tired to follow along as well as I’d like.

My executive functioning problems also affect my professional and academic life. I find it difficult to make plans for class- or work-related projects if I don’t already have a framework for them in my head. Once I have a system for doing something, tasks become much easier. I sometimes need prompting and check-ins to finish projects. I consider myself a reasonably independent worker, but I need an initial push to get into the groove. Check-ins while a project is underway can also help. I also benefit from collaborative to-do lists from supervisors and clients. Sometimes I find myself waiting until the deadline is perilously close, and then start a project in earnest because the deadline makes things feel more real.

Having executive functioning issues make me feel like a crappy adult because I do care about getting things done. It’s just that I don’t always have the bandwidth to develop a workable system that I can stick to. I worry constantly that people think I’m lazy or a procrastinator, because I frequently get stuck. I used to get screamed at constantly by my parents because of executive functioning difficulties, but I didn’t have the language to describe what I was going through, to help them understand.

I’ve been self-medicating with caffeine, for a while. I bought a case of 24 Red Bulls two weeks ago, and after I ran out, I bought extended-release caffeine pills to take instead. Caffeine helps me actually sit down and start things like work projects. It has its side-effects, but it’s more effective than doing nothing.

I think I would benefit from ADHD medication or something similar, but I worry that I’ll come across as meds-seeking. My psychiatrist wants me to go through a neuropsych evaluation, but the waiting lists for those exams are long, so that won’t help me right now. And right now is what’s frustrating me. Professionals may consider me to have “mild support needs,” but that doesn’t mean that I don’t have legitimate support needs.