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
unstrangemind.com

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
Unstrangemind.com

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.

Sections:
  • 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.

Conclusion


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.