Saturday, December 30, 2017

Identifying Good People and Avoiding Bad People: How Can an Autistic Person Stay Safe?

Photo © Dee Teal | Flickr/Creative Commons license
[image: Blonde white teen girl whispering into the ear
of an adult white woman with long brown hair and bangs.]
Maxfield Sparrow

It started as a tweet from @frogautistic to my friend, Shannon: “Would you know of any guides for adult autistics wanting to differentiate between Good & Bad people.”

Shannon replied:
Shannon's response included a link to my TPGA article about social reciprocity, in which I analyzed some research on how non-autistic people respond much better to Autistic people when they read our words, compared to when they interact with us in person.

I am always happy to make time to help people and I am very grateful to Shannon and The Thinking Person’s Guide to Autism for helping me help others. So I thought about the question as I was waiting for sleep to overtake me, and I woke up thinking about how complex a question this actually is.

See, I’m 50 years old and I’ve met a lot of “good eggs” and “bad eggs” on the long path from my original birthday to today. And I’m (mostly) getting pretty good at spotting the bad eggs and steering clear of them after all that time, but it’s hard because there really aren’t clear, simple, easy rules for that. And what guidelines do exist are not very easily boiled down to 280 characters. So if you can forgive me for spreading out into the larger space an essay affords, I would like to do what I can to provide some guidance, such as it is.

Here are a few basic but important rules for filtering people to let the good ones in and keep the bad ones out: Slow Down, Set Boundaries, and Watch for Red Flag Patterns.

Slow Down

In looking back through my own life and thinking about what would have helped me steer clear of people who were harmful to me, the number one piece of advice I would give myself—and thus you—is to slow down. I’ve noticed that when I get lonely and rush into a friendship or other relationship, I miss seeing warning signs that I might be headed in the wrong direction. People call these warning signs "red flags" and that’s a good name, because they really are like a construction worker waving a red flag at you to let you know you are headed toward danger.

People have red flags, too, and usually don’t even realize they’re waving them at others. When we move too quickly, we don’t always notice those red flags waving. Relating with others happens so fast it can be overwhelming. The emotions of getting to know new people can also be overwhelming. When we slow down and take our time, we have a chance for our minds to catch up with all that information that has been coming at us when we are with the other person and interacting together.

In fact, moving too fast is a red flag itself. This is a really important thing to remember: the red flags of relating with others aren’t just the things that you want to watch out for from other people. They are also the things you want to avoid doing yourself. It makes sense when you think about it: I’m not the only person who notices patterns in how people are with each other. Anyone else who notices patterns will eventually realize that bad things happen when people get too close too quickly, and if you aren’t working to keep things slow enough to take care of yourself, you will also be waving a big red flag at the other person. A person who notices patterns and has noticed this one before will back away from you, both physically and emotionally, if you are moving too fast.

What does moving too fast or slowing down look like? Well, the speed that makes people comfortable will vary from person to person, but comfort is not always the best gauge. One reason why people who have been abused often keep getting abused, again and again, is because the behaviors that make it easier for other people to abuse them are the only way they have learned to be. It feels safe, familiar, and comfortable to keep being the way we have always been, even despite past negative consequences. I have noticed this pattern in myself, and I have noticed it in other people.

Slowing Down Is Important in Seeking Love

I dated a very nice woman who had been abused by both her mother and her last girlfriend before she dated me. Chances are good it had been a lifelong pattern for her, and everyone she had been close to had been abusive. As a result, I could see her being very uncomfortable with our relationship and intentionally trying to start fights. When she wasn’t being yelled at and threatened, it made her panic. She had learned that people yell at you because they care about you. I wasn’t yelling, so maybe my feelings were not deep enough? Maybe I didn’t care enough about her to yell at her? So she did things to try to make me upset enough to yell. I didn’t even realize on my own that this was what was happening: It took a counselor to point out the pattern. Once we saw what was happening, it was life changing for us both.

The point of telling you about this relationship is to illustrate that you can’t always trust what feels comfortable and familiar, especially if you have been abused in the past. It might feel very comfortable and even ecstatic to meet someone on Monday, never separate longer than it takes to use the bathroom (if that!) all week, and be living together or even engaged to be married by Thursday. But that can be very risky behavior. While you might be lucky and have suddenly found just the right relationship (it does happen), the odds are against that, and it is probably an extreme example of what moving too fast looks like.

When I was starting to notice these patterns, and resolved that I was not going to move so fast anymore, I was terrified. What if I really had just met the perfect person and I was trying to slow things down and then lost them as a result of hesitating? But now I realize that if someone really is perfect for me and I’m really perfect for them, our relationship will survive moving more slowly. It may actually strengthen our relationship to take our time with things.

Slowing things down will also give you time to recognize when you are heading into a relationship that will be trouble for you. Slowing down is also not at all likely to chase off a relationship that would be good for you. If you are keeping things slow, and it is frightening to the other person and no matter what you say, they just keep pressuring you and finally deliver an ultimatum (“do this or I am leaving you”) and then break up with you, you have just learned that they were not able to trust you and go the distance with you. They might otherwise be the greatest person in the world, but they were not able to stay calm enough to give you what you needed to be safe, and so they weren’t a good choice for you regardless. When you are with someone who loves you, they are willing to give you the space and time you need to feel safe and strong. That is a big part of what love is.

A slower pace can mean waiting on sex to give time for an emotional bond to develop first. A slower pace can mean waiting to tell your deepest secrets until there has been time for you to see how the other person behaves when they are very anxious or in a crisis. You don’t want to trust someone with your secrets until you know if those secrets will be safe even when things are bad or stressful. A slower pace means you are spending some time apart as well as some time together. Time apart gives you room to think about what is happening without the pressure of being in the middle of everything while you are trying to think about it.

Slowing Down Is Important For Friendships, Too

Last year I met a person who was interesting but was also moving our friendship forward way too fast. We were together pretty much around the clock for days. She essentially took over my whole life and I didn’t notice it because I barely had any time away to think about what was happening. It was almost like being under a magic spell, even though I’m not saying that to excuse myself from responsibility. I was entranced—not by magic, but by her presence. Some people are really good at weaving themselves into other people’s lives and we Autistic people are especially vulnerable to those sorts of people.

It was only when she called me “special” as an insult that her spell was broken. She was using “special” as a euphemism for the R-word, and it really stung. And once she insulted me like that, I was able to look back at the two weeks we had spent together and see that she had been insulting and manipulating me every day, but I had been ignoring it because I was allowing things to move too fast to see the red flags. When she called me "special" and I stopped in my tracks, we had already become roommates. I had paid rent but I packed up my things and walked away from everything because I realized that she was really bad for me and I had been moving too fast to see it, until it had gone so far. I lost money and had to endure her yelling at me for leaving our apartment and breaking the “friendship” and I even felt some fear that she might do something bad to me. I now know that if I had refused to let things move so fast, I probably would have known better than to try to be roommates with her.

Set Boundaries

How I slow down now: I sat down when I was not in the middle of a new friendship or other relationship, asked myself hard questions, and came up with a set of friendship and relationship boundary rules. I can’t tell you what your rules should be, because only you should decide on them. And every time you have an unpleasant encounter with someone, you should revisit your rules, and ask yourself if you broke any of them. If you didn’t break your rules yet still ended up in a bad situation, then ask yourself if you need to modify any of your rules.

In coming up with your own rules, don’t just think through my questions below: Write your answers down somewhere, and put them somewhere you won’t lose them. Look at them periodically. Put a regular date on your calendar to review your rules. Revise them as necessary but never in the heat of the moment. When that very attractive person is asking you for sex? That’s not the time to revise your personal rule about how long and how well you must know someone before having sex with them.

  • When you are first getting to know someone, how many hours are you willing to be in their presence before you ask for a break? A first date probably should not last a week. You might find yourself in situations that go against the rules so think about that, too. For example, if you are at a weekend retreat and meet someone, how will you handle together time? Know that you will feel pressure to spend every minute with that great person you just met. How will you counter that pressure from them or from yourself? Maybe you will have a different set of rules for situations like that? Or maybe the same set of rules no matter what?
  • When you are dating someone, how will you decide it is okay for you to be sexual? Will you decide based on an amount of time you’ve spent together or length of time you’ve been dating? Are there personal “road signs” that will let you know it’s okay? Decide what your rules are before you meet someone special and stick to those rules to protect your body and your heart.
  • How will you decide that you trust someone enough to tell them your secrets? What will you do or say if they start to tell you very personal things about themselves before you’re ready to tell them personal things about yourself?
  • How well should you know someone before becoming roommates? How close should you and a romantic partner be before moving in together?

These are all just suggestions. Take some time to get to know yourself well and look back over your life’s patterns, and you will see where you could benefit from adding more structure to your life. You will be a good judge of what rules you need and what limits to set. Trust yourself to make good decisions when you are thinking about these things while you are alone and calm. You also might want to talk about your rules with a therapist you trust or someone close to you in your life that you trust.

This is called “setting boundaries.” You decide what you want from life, and what you will not put up with. You make personal rules about those boundary lines. And you protect those boundaries by refusing to let others violate them. That includes you, by the way. All of us can be our boundaries’ worst enemy. Setting and keeping boundaries is as much about staying strong in your own sense of self as it is about refusing to let someone else push you farther than you wanted to go.

If it helps you to recognize your patterns, try writing down the names of all the friends and lovers who have turned out to be unpleasant experiences. Write down what went wrong, and how you might have recognized those red flags sooner. A list like that can be depressing—be ready to comfort yourself when you tackle it—but it can also be very enlightening. That is exactly how I came to recognize my own patterns that were holding me back from the kind of life, and community, and love I wanted for myself.

Watch People For Red Flag Patterns

Slowing down helps you to recognize your own patterns and gives you time to see the red flags the other person is waving. Watching them, and thinking about how they are treating you and others, is how you notice those red flags.

Clearly if they hit you and yell at you a lot, you will know they are not good for you. But also watch how they treat other people: A person who insults the server at a restaurant, yells at the clerk at the grocery store, or intentionally cuts people off in traffic while saying nasty things is not someone you should trust, even if they are treating you marvelously at the same time. It is a red flag: the way people treat others is the way they will eventually treat you.

If someone is with you because they are cheating on someone else who doesn’t know about you, that’s another red flag. I’m not talking about open relationships or polyamory where people are dating or having sex with more than one person and doing it ethically by being honest with everyone. If you are sneaking around with someone, they have just taught you that they are not someone you should trust.

I dated someone whose wife had died and his adult children were not ready for him to start dating again. He wanted me to sneak around with him and hide our relationship from his children. That was very emotionally damaging for me because it triggered memories of my childhood abuse. It was also a huge red flag. He was willing to lie to his children and he was willing to force me to sneak around and hide. I could never trust that he would tell me the truth and not sneak around and hide people or other things from me.

The reason I say to watch for patterns is because anyone can lose their temper. Anyone can become so anxious they shout at you. If someone loses their cool once, and they did not call you nasty names or hit you while they were angry or afraid, decide if you want to give them another chance. But if they lose their cool, and use demeaning language toward you, or physically hurt you or your pet or someone you love, you’ve got to protect yourself.

I once had a partner who yelled every day. He was in a health crisis and experiencing a lot of pain, so even though I didn’t like the yelling, I understood. He would yell when he was in pain but he was not yelling at me—he was yelling at the pain—so I stayed with him (I can understand someone yelling because they are in pain. I don’t like it, but I can forgive it). But after he had been sick for a long time, the yelling turned nasty, and he said lots of hurtful and demeaning things to me. That’s when I left him.

There is never an excuse for being hurtful toward others. Someone may try to tell you they didn’t mean the things they yelled at you when they were in pain or drunk or in some other incapacitated state, but adults who love you will not say harmful things to you even when their self-control has been worn down through personal suffering. It is your choice whether you want to forgive someone for yelling, but I beg you to refuse to put up with being verbally abused or battered.

Going slow and watching for patterns are your two best tools for staying safe with people. People have patterns of behavior, and if you take your time getting to know them, they will fall into their patterns. Watch for red flags and decide ahead of time what you will accept and what is unacceptable. Keep things slow so you can spot the patterns. Don’t get too intertwined with someone else until you’ve had a good chance to see what their patterns are, especially how they are when they are sick, tired, or under stress. Take time apart while you are getting to know each other so you have space to think about how things are going and decide how you feel about their red flags. Everyone has red flags, so if you haven’t spotted any at all, slow down some more and pay closer attention to their patterns. Everyone has red flags but some are flagging you about behavior that you can live with while others are flagging you about behavior that you do not want to be trapped in.

Stay strong, set boundaries and keep them, stay safe. May you find loving friends and happy, healthy relationships with others, always.

Friday, December 22, 2017

Authoring Our Own Lives: How Autistics and the World Benefit from Auti-Biography

Maxfield Sparrow

Photo © barbara w | Flickr/Creative Commons
[image: Hands on a typewriter keyboard, at a sunny wooden desk,
next to a drink on a crocheted white doily, amidst some plucked green leaves.]
The last decade has seen a blossoming of blogs, articles, books, and documentary films about autism, authored by actually Autistic people. This is an exciting time of growth for Autist-created content about autism, and I want to encourage all Autistic people to document their lives: whether in a private journal, or to share with the public.

There are great personal and community benefits that come from Autistic people writing about our lives—especially when we write about emotions, victories, and challenges and not just the factual events by themselves, although any autobiographical writing is helpful to the writer as well as to others if they decide to share what they’ve written.

Michel Foucault, the postmodern philosopher, wrote in Technologies of the Self:
“Writing was also important in the culture of taking care of oneself. One of the main features of taking care involved taking notes on oneself to be reread, writing treatises and letters to friends to help them, and keeping notebooks in order to reactivate for oneself the truths needed.”
Centering the Narrative - How Writing About Your Life Benefits You

There are many benefits to writing about your life, even if you choose not to share that writing with anyone else. Possibly the biggest benefit of writing about your life is that you finally get to be the center of your own story. So many of us grow up with other people defining us, and telling us who we are, and what is expected of us. Writing about your life might be the first time that you get to sit in the captain’s chair of your own life.

You are also the expert in your own life. Writing about your life, and exploring your emotions around things you have done, and things that have happened to you, helps you to see how much more you know about your life than other people. Or, just as importantly, you may not yet be the expert in your life, but writing about yourself helps you to become that expert. Many people find that writing the stories of their life helps them to see patterns, and discover cause-and-effect they hadn’t been aware of before.

Allowing other people to “invent” our life stories for us leads to problems when those explanations do not accurately depict our lived experience, as White and Epston discuss in their book, Narrative Means to Therapeutic Ends. Writing our own stories “challenges the boundaries” between what the authors call “local knowledge” and “expert knowledge.” “Expert knowledge,” according to White and Epston, belongs to the person who owns the vocabulary to describe a subject. An example they give on page 189 of their book is how medical professionals “transcribe” the language of a patient, for example, changing “feeling miserable” to “displays low affect.” “Eventually, the patient’s experience is not recognizable,” they tell us. Writing about our own lives is a form of “retranscription” that takes back our lives and experiences from others, putting our lived experience in our own words, and thereby placing or reinstating us as the experts on our own lives.

Every piece of your life’s journey has worked together to make you the person you are today. When you write about your journey and how it has affected you, you uncover and clarify your values and priorities. It might sound illogical, but in documenting who you are, you discover who you are. Seeing things written down on paper or in pixels on a screen can help you to see that you have ideas and experiences of value to yourself and others. Even if you never show your writing to someone else, documenting your observations about events in the world and in your life helps you to feel accomplished with a sense of having made a mark on the world. What’s more, re-visiting your past with the wisdom you have gained through the years can help you to make sense of things that might have seemed a meaningless jumble before. Writing your life stories helps you find more meaning in life and uncover your own personal “laws of life.”

Writing your feelings and history can be cathartic and therapeutic. It can give you a safe place to address your traumas and work toward healing them. Many of us who have been through therapy have found the standard pace too invasive and emotionally overwhelming. When using autobiographical writing to uncover and work through traumas, you get to set the pace of disclosure.

As Rasmussen and Tomm noted, “Perhaps there is no other system of psychotherapy in which the client has so much control over the rate, depth and intensity of his or her personal therapeutic work.” In her book recommended later in this article, Bolton said, “Writing is a kind and comparatively gentle way of facing whatever is there to be faced. You can trust it to pace itself to your needs and wants rather than to anyone else, such as a therapist. It can be private until you decide to share it.”

Not only can writing your stories help you move from victim to survivor to thriver, but there is documented scientific evidence that writing about your life in an emotionally expressive way improves your health, from strengthening your immune system to improved outcomes in asthma and rheumatoid arthritis.

While writing traumas can be intense, you can also write about other times in your life. It can be fun to write about the people, places, and feelings that have been positive for you; and while you are doing that, you will also be developing your writing skills. Everyone’s writing has room for improvement, and strong writing skills help us in a wide range of life activities whether communicating with friends, with employers, with clients, with bureaucrats, and so on.

Finally, all of the above benefits: getting to know yourself better, feeling more competent and in charge of the narrative of your life, addressing and resolving traumas and other problems, reminiscing about the good times, and improving your skills can lead to an increased sense of peace and wholeness overall.

There are a couple of good books about exploring your life through journaling that you may find helpful in this journey:

Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval by James W. Pennebaker, Center for Journal Therapy Inc. (2004)
Dr. Pennebaker is a researcher at the University of Texas in Austin and his work centers around studying the benefits of journaling. Much of the medical research cited in this article comes from  Pennebaker. 
Dr. Pennebaker’s website:
The Therapeutic Potential of Creative Writing: Writing Myself by Gillie Bolton, Jessica Kingsley Press (1999)
While Dr. Pennebaker comes at journaling from a hard science perspective, Dr. Bolton comes at it with equal rigor but a more humanities-based perspective. Bolton’s book can be used by either therapists or individuals and does much of what Pennebaker’s book does, but some readers/writers will prefer Pennebaker’s approach and others will prefer Bolton’s. 
Dr. Bolton’s website:
Other resources to consider:

Blazing a Trail - How the Community Benefits When You Share Your Life Writing With Others

It takes a lot of courage to share your life stories with others, and you must never feel like you have an obligation or duty to do so. There is so much benefit to just writing about your life for yourself. Even though I am about to talk about the benefits that can come from sharing your life, do not feel pressured by anything I say. Your life is yours, and part of taking charge of your life through writing about it is deciding whether anyone else should see what you’ve written or not.

Sharing emotional stories of your life makes you vulnerable, so you should think carefully about how the sharing will impact your life, your job if you have one, or your future chances of getting a job. Sometimes sharing life stories can attract bullies who use our openness to try to make us feel bad about ourselves. Sometimes people will read your stories and decide you aren’t the kind of person they want to be friends with. I could tell you that those people don’t deserve your friendship anyway, but that doesn’t take away from the pain you will feel at seeing people you thought were your friends pulling away from you.

Only you can decide whether it is worth it to you to take the risk of exposing your personal stories. While sharing your stories can be tremendously helpful to the world, we live in a world of seven billion people, which means there are at least seventy million Autistic people of all ages, genders, nationalities, and ability levels in this world. If even 0.1% of the world’s Autists decide to write or speak about their lives and make that writing public, that’s seven thousand people around the world, writing from a first-hand perspective about their Autistic lives!

Of course your voice is unique and only you can say the things that you can say. And as poet Allen Ginsberg said, “It’s what we least want to share that the world is bleeding to hear.” Your voice and your life matter so much! But with potentially thousands of other Autists out there writing and speaking about Autistic life, you must never feel that you have to do or say what you feel unsafe doing or saying. Your life is yours alone.

That said, there are ways that sharing a life story can benefit other Autists and the rest of the world. The biggest benefit is getting the voices of the experts out there. As I said, you are the expert on your life and Autistic people, collectively, are the experts on Autistic life. No single one of us can define and embody autism completely alone, but the more voices are out there, the bigger and fuller the picture of autism we create together.

Have you noticed that we can talk about some aspect of being Autistic over and over for years before someone finally conducts a research project and adds what we have been saying to the body of scientific knowledge? We get frustrated when that finally happens and so many of us will say, “all they had to do was ask us.” But that’s not how science works. In fact, the research most likely happened because we were all talking about that aspect of our lives. The things we say today in our books and articles and blog entries are tomorrow’s science, because the scientists listened to us and chose which questions to address based on the things our community had been saying.

When we share our stories with the world, we educate the world about our experiences and our needs. This education we offer helps the world meet our needs better. It helps parents understand their Autistic children better. It helps government organizations steer policy, and ADA centers shape available school accommodations.

Writing about our lives and sharing that writing helps to dispel rumors and stereotypes about Autistic people. How many of us have written about empathy? We talk about our empathetic feelings, we talk about not always knowing what’s going on with others but feeling for them when we do know. We talk about the measures we take to avoid hurting other people’s feelings. We care about writing content notes and trigger warnings to help take care of other people’s feelings and traumas. We stress the importance of image descriptions because we care about whether Blind people are included or not. We share the evidence that we do have empathy even when it doesn’t always look the same as most people expect empathy to look.

Sharing our writing leaves a legacy for future generations, both Autistic and not, documenting the struggles of our times.  When we write about our lives we are creating a time capsule in words that can be opened any time in the future, near or far in time from today. The world will look different some day. I hope that there will be more understanding and acceptance for us in the future. That means that the things we struggle with and the battles we fight together in generations to come will be different from the challenges and goals we face today. Writing about our lives now will give future generations something to look back on. We are creating history with our words today.

Not only can writing our traumas help us to heal them, but sharing our traumas can help others to heal. When we write about our challenges and struggles and talk about how we solved problems or came to a place of increased peace and self-acceptance, we become a role model for others who are going through similar challenges and struggles. Others can learn from our process and feel less alone with the heavy burdens they carry.

Even in smaller life struggles, we give others tips and tricks. Years ago, Joelle Smith had a list of tips on her web site and I learned the value of making laminated lists of routines. She said she laminated it to be able to write on the list with a dry erase marker. So, for example, if she was going to have blood drawn the next day, she could write “wear short sleeves” on her morning routine list. It’s just a little life story and it doesn’t share a deep trauma (though some of her other writing does) but it has stuck with me for years and helped me so much. Our life stories do not have to be traumatic or intimate to have a deep impact on others.

When we share our life stories we give others courage to share their life stories as well. Someone has to go first and often that act is a trail blaze, encouraging others to share their experiences on the same topic as well. I have noticed over the years that blogs written by Autistic people often converge on the same themes as a thought travels through the community and different writers share their own take on it. These blog posts are not repetitive or redundant because each person brings a fresh perspective to the issue with new thoughts, feelings, and experiences on the same topic. Those who have not yet shared any life writing in public are heartened and empowered by seeing others sharing personal stories. Many observers eventually become contributors themselves.

The healing power of shared stories is especially potent among those who have been disempowered, demoralized, or disenfranchised. In Bolton’s book, she writes about the power that comes from writing. “[Therapeutic writing is] for patients and by them rather than being done to them. Too much medicine is diagnosis from the outside and having treatments done to the patient.” Autistic people are far too familiar with being medicalized and treated. Writing about our own lives puts us in charge and re-frames our lives from our own perspectives, something Nick Walker emphasized in his important essay about shifting from the pathology paradigm to the neurodiversity paradigm: Throw Away the Master’s Tools.

Bacigalupe wrote about the great importance of personal writing, calling it “relevant to discussions about issues of social justice.” He talked about the empowering, inclusive nature of sharing writing from people who are (as Wright and Chung put it when discussing Bacigalupe’s work), “inherently subject to discrimination and oppression” with those in positions of power. Bacigalupe writes, “Writing and written text constitute and actively shape our lives, defining our identities and location in the larger social context.”

Whether these stories are shared in books, scripts, articles, or blog entries, they open the way for a dialogue in the community about the issues raised in writing. Autistic book clubs, movie nights, Twitter chats, Facebook forums, and blog comment sections are great places for people to take in autistic words and give back to discussions about aspects of our lives and being that run quite deep. Sharing autobiographical writing helps to build community with shared references and connection over linked issues.

Whether you write your life or not, whether you share that writing or not, these are very personal decisions that only you can make. But know that there is benefit to you if you choose to write about your life and benefit to the world if you feel safe and good about sharing your writing with others.

Saturday, December 16, 2017

Fast Learners Are Not Better Than Other People

Finn Gardiner

(Content warning: ableist slurs.)

Photo © U.S. Department of Education | Flickr/Creative Commons
[image: Three schoolchildren of different races,
sitting together in a classroom reading corner, reading books.]

It is not nice to say that fast learners are better than other people. That is because it is mean to people who learn more slowly. It is not bad to learn slowly. It is not bad to be a fast learner either. Everyone can learn something. We just need different ways to learn things. That is OK.

But some people treat fast learners like they are better than other people. That is not nice. I am a fast learner. I am not better than somebody who learns more slowly than I do. I just have different learning needs.

Some people call fast learners gifted. There are many problems with that. Gifted is not a good word. Calling fast learners gifted is not fair. That is because it feels like people who learn slowly are not as good. People also say fast learners are intelligent. Intelligent comes from a Latin word meaning "reading between." That means that we see patterns quickly. Other words people use for fast learners are smart, sharp, bright or clever. People think they are nice words. Sometimes they give a message that slower learners are not worth as much. Some people use these words to say it’s better to learn fast. This is unfair.

Some people learn more slowly than others. They can learn, but it takes more time for them to pick things up. That is OK. They are people and everyone is able to learn something. They just need more time. People say that slow learners have intellectual disabilities. This just means they take longer to learn. Sometimes people use mean words about slow learners. Some of these unkind words include retarded, idiot, stupid and dumb. We should not call slower learners these words. These words are hurtful.

I think everyone deserves to learn things in their own time. I think that people can be good or bad no matter how they learn. We are all people. We should not judge people by how fast they learn.


Republished with permission.

Thursday, December 14, 2017

The Taxonomy of Plants: A Tale of Multi-Generational Autistics

Hannah King


If you wanted to talk to my grandpa, plant taxonomy was a good opener. He would take us for long walks in the forests of North Jersey. Be quiet now, don’t scare the wildlife.

“What kind of plant is that, Grandpa?” I would whisper. I never remembered the answer. But I liked to hear him talk to me.

Photo © Hannah King
[image: Close up of a barnacle-covered rock at low tide.]
Every July, us kids would stay at their house near the shore. Grandpa, who had been an inventor at Bell labs, kept the tidal charts taped to the side of the refrigerator so he knew when to fish, when to swim and when—at four in the morning—to take the six of us racing down the pebbly sidewalks to collect shells and walk the puddled moonscape of a Jersey low tide.

Back home in his garage, he had set up aluminum tables with giant volumes for us to pore over: collected stamps from around the world, each crispy page a pageant of colour. On the other table, weighty blue tomes that told the story of money: year-by-year pennies, nickels, dimes. Silver dollars. $2 bills. Worn ancient coins he called “worthless” that I would shift and pour from hand to hand. “Where is this one from, Grandpa?” He would talk to me.

At 10:00am each day, the phone would ring. Grandpa’s chess partner calling in his move. Like two men in distant mirrors, each would make a move on his own chess set, then bid goodbye and hang up. Grandma would go and cook. Grandpa would walk to the piano and play old standards for hours then. Not much in the mood for chit chat.

Photo © Hannah King
[image: Long view of an extensive low tide A single person
is visible in the far background.]
Upstairs at night on steel-framed beds, we would listen to the roll of thunder and the clatter of rain as storms rolled through. Grandma and Grandpa, meanwhile, had retreated to their side of the hall. The storms, like the seas, turned us all into wilder children but no one ever came to say calm down or comfort us. My brother told me the thunder and lightening was “God bowling.” I pulled the damp sheets tight, fell asleep.

Grandpa never missed the name of a plant—ever. My brothers would marvel at his memory, as he recounted the history of plants, places, weather patterns, the old hurricanes, matters numismatic, philatological. At the end of July, we would bid them goodbye with quick hugs and pile into the station wagon to go back to the midwest. Our visits to Jersey were at once exotic and a kind of homecoming. These were the people my father had left behind.


When he was a young man, my father went to lunch with his uncle in the city. There, his uncle offered him a job in the family business. When my dad hesitated, his uncle shook his head and frowned. “You don’t want to turn out like your father,” he said.

My father left that fateful lunch and decided to move his young family to the countryside of Wisconsin. Took us all fishing, camping, hiking, off to wander the hills like a troupe of semi-feral von Trapps, freed from the rigid city life of family business, barefoot and happy living in a house on “some land” with horseless stables and a million grasshoppers flicking our legs as we ran through summer weeds. On hot days, we would line up in the garden to plant seeds in neat rows and Dad would talk to us about the life cycle of animals and fish, of plants and pollination. As with my grandfather, the outdoors was where I knew my father best.

My dad’s garage was different than Grandpa’s. He kept a couple vintage cars in it. My favourite one had a canvas roof and smelled beautifully musty. The cars had brand names and a lot of information attached to them, which Dad told us but I forget. What I do remember is the smell of sitting in that car, especially after a rain.

Sometimes Dad would go out to the garage and sit, too. In the years when he was unemployed, a phantom anger would overtake him—usually at dinnertime—and he would shout, throw things across the room, break chairs, lose all control in the house with us, then retreat to the garage and the car. Everyone would scatter from the dinner table but me. I could hear him out there wailing and crying through the screen door. Then morning would come with an apology.
Script for a parent apology. 1. Listen. 2. Say “It’s ok, I understand.” 3. Stay still: here comes the hug.

My brother Mike was an engineer, like Grandpa. He got married first, had kids first. His son, David, was diagnosed as autistic as a young child. Intensive therapy was prescribed and they said yes.

When my nephew was little, he used to like to run and throw himself onto me. I knew why; I remembered doing that too. But times had changed, and with an officially “autistic” child present, we were all quickly versed in a new and uncomfortable way of responding. It was a whole new language of “Hands quiet.” “No repeats.”

David has loved the moon from the time he was very small. He can tell you about the cycles of the moon and when each kind of special moon is coming. I like to go outside away from the din of our family gatherings and look up with him. In the dark and the quiet he can ask me questions as many times as he wants; he can flap. I try to think of things that will bring on a flap. I try to stay connected in the dark under the moon.


I ran too, like my Dad. We moved ourselves to Canada. My son was diagnosed autistic as a young child. Intensive therapy was prescribed and we said no. We chose to unschool and now travel with whatever time and money we have. Our most recent trip is to the Bay of Fundy, which has the largest tides in the world.

The tide schedule sits on the hotel dresser. I check and re-check it; then the alarm rings. We all scamper about in the dark, grabbing cameras, throwing on yesterday’s wet clothes, forgetting shoes, race-walking down to the shores. Under the light of the stars, it all looks like a stellar landscape with giant, exposed boulders covered in prickly crustaceans, tiny sleeping barnacles hanging off heavy curtains of seaweed, waiting to breathe when the waters rise again. I walk along cold spring water beds, searching the sand for ancient volcanic rock, petrified sea mammals, and any kind of creature to touch and hold and share.

Kyle is up ahead of me, singing, running, jumping. He grabs a stick and draws into the wet sand: a giant map of Toronto’s subway system. “Next station is Spadina. Change here for Line Two!” The sun is a gold ball rising above us. Behind us lie the dark tunnels of St. Martins.

In a few hours’ time, the tidal bore will rush through, filling up Fundy. It is a sight to behold when that brown wave comes racing down the riverbed. After the tidal bore, the river settles into a lazy flow that is at once deep brown and yet silvery-reflective. The reflections are more focused than the sky and clouds above: the water’s surface like God’s finely tuned camera lens. We sit on the mucky shores and just look.

Back at the hotel now, the day has just begun but we are wiped out. Not much in the mood for chit chat. Kyle flips out the camera and looks at the photos we shot. Ron makes some coffee and checks his iPhone. I sit down in the quiet and write.

Monday, December 11, 2017

Why To Siri With Love Is a Wrecking Ball of a Book

Maxfield Sparrow

[Content note: possible triggers include: forcible sterilization of minorities including Autistic people, forcible gynecological experimentation on minorities, Judge Rotenberg Center, electric shock, stereotypes about Autistics lacking empathy or a sense of humor, stereotypes about Autistics or Black people lacking the ability to feel pain, snakes and feeding live rodents, harmful Supreme Court verdicts, dehumanizing of Autists, getting drunk, preferring drunkenness to talking with Autistic children, humanizing the author of a grossly dehumanizing book.]

Come mothers and fathers / Throughout the land 
And don't criticize / What you can't understand 
Your sons and your daughters / Are beyond your command 
Your old road is rapidly aging. 
Please get out of the new one / If you can't lend your hand 
For the times they are a-changin'. 
-Bob Dylan

[image: Book cover: A blue background
with informal font white text reading,
"To Siri With Love," with a photo of a
child looking at an iPhone seated in the
middle of the text, wearing a baseball cap
and seen from overhead.]
Like many of my fellow Autists, I first heard about Judith Newman’s book To Siri With Love: A Mother, her Autistic Son, and the Kindness of Machines through the Twitter hashtag #BoycottToSiri. The book itself is expanded from Newman's same-titled 2014 New York Times Fashion/Style column, and is a memoir of her New York City life with twin boys, Gus and Henry. Gus is diagnosed Autistic; Henry is not.

#BoycottToSiri arose on Twitter after an encounter between Newman and Autistic activist and educator, Amythest Schaber. In To Siri With Love, Newman described Schaber as “look[ing] like everyone’s favorite manic pixie dream girl” (page 42). Schaber was understandably displeased with this description, as it is not a compliment.

"Manic Pixie Dream Girl" was coined by Nathan Rabin, a film critic who described a Manic Pixie Dream Girl as “that bubbly, shallow cinematic creature that exists solely in the fevered imaginations of sensitive writer-directors to teach broodingly soulful young men to embrace life and its infinite mysteries and adventures.” Two years later, Rabin and colleagues wrote an article about the Manic Pixie Dream Girl (MPDG) in which they compared the sexist trope to a racist film trope known as “the Magical Negro,” saying both archetypes are, “largely defined by secondary status and lack of an inner life.”

I have a passion for film studies, so I can't gauge how widespread awareness of these movie tropes are. But MPDG and many other tropes are featured on a website, TV Tropes, that has an Alexa ranking of 664th in the United States, where over half its traffic originates. That’s pretty popular. For semi-random comparison, Autism Speaks—the largest autism charity in the world—has a U.S. Alexa ranking of 8,241. I’d say that means there’s a strong likelihood that Amythest and I are not the only people out there immediately aware that “Manic Pixie Dream Girl” is a grave insult. Newman, whose life appears to be quite filled with family and career, may not be as much a film buff as some of the rest of us, but MPDG is such an odd phrase that I would have looked it up before I felt comfortable including it in a piece of writing in which I could have simply referred to a person as “pixie-like”...if I felt the need to describe their appearance at all.

Perhaps I have waxed over-long, gentle reader, on a sexist slur innocently cast upon someone Newman clearly admired. After all, as Newman and her fans pointed out several times, the words following MPDG were a description of some of Schaber’s t-shirt slogans, followed by, “These videos should be required viewing for every parent of an autistic child.”  But I want you to understand what pre-formed opinions I brought to my reading of To Siri With Love.

The confrontation between Newman and Schaber quickly escalated to a full-out battle with recriminations and mass blockings. If you’ve ever been swept into a Twitter war, you have some idea of how stressful the event must have been for all involved, particularly the duo at the center of the maelstrom. What caught my eye in the midst of it all were multiple warnings under the hashtag, telling me that Newman wanted to sterilize her teenage son. Of course I then wanted to read that book for myself and review it, so here we are.

I’d like to move forward, but first a few background links regarding the Twitter battle and boycott call. Amythest Schaber posted their own Twitter thread about the boycott. Culturess wrote about the boycott, including a link to a lengthy Twitter thread by Autistic reviewer Kaelan Rhywiol. Romper’s article about the boycott includes a USA Today video clip in which you can see glimpses of Gus for yourself. Senior editor of The Thinking Person’s Guide to Autism, Shannon Des Roches Rosa, supports the boycott in an essay on her personal blog, Squidalicious. And although I have been participating in the #CrippingTheMighty Boycott for a few years now, I made a lone exception to read their article about #BoycottToSiri and was favorably impressed with their reporting. And while I was working on writing this review, Schaber released a video discussing #BoycottToSiri.

It took me three days to read the book. Yes, I am a slow reader, but also no, I’m not that slow of a reader. I wanted to take my time with the text, to read it carefully and critically, and take time to process the actual content of what I was reading. I also read in a state of dread, not entirely dissimilar to the sensation one experiences in a commercial haunted house, continually apprehensive about what may be jumping out around the next corner. Maintaining this state of high alarm for days is draining and I needed lots of time to rest and recover from the work of reading a book that had raised such intense emotions in my communities, both among those who had read the book and those who had not.

External control over the reproductive rights of disabled adults is an understandably emotional topic in the autistic community. I do not want to co-opt any other group’s struggle, but it is difficult to convey how strongly we feel about this issue without pointing to related suffering among other minorities: Deaf people who were regularly sterilized and refused immigration to the United States, for example. Marge Piercy’s sci-fi classic Woman on the Edge of Time explores the aftermath of the protagonist’s forced sterilization for the “crime” of being poor and a Woman of Color in 1970s New York City—a scenario that actually happened repeatedly.

For additional context, activist, mother of a Black Autistic teenager, and dear friend Kerima Çevik, wrote of Newman’s book:
“This is a human rights affront. It is presenting the idea of involuntary sterilization of her son to a mass audience that may not have considered this in a time when eugenics is waxing globally. There is no context in which this is okay. There is no teachable moment here. The book is published and the idea is out there. For me, knowing what harm forced sterilization did to my race and to disabled people in the past, this is an unacceptable thing, and her thoughtless, cruel words in her vain book have now placed thousands of disabled adults at risk. There is ignorance and there is this Pandora’s box of an evil book that can have devastating public policy consequences.”
Later, Çevik shared a video with many of us, discussing atrocities committed against Black women’s reproductive rights. (The mini-documentary was so distressing that it took me four viewing sessions to make it through its four minutes of video.) A parallel between the Black experience and the Autistic experience leapt out at me: Doctor James Marion Sims, inventor of the gynecological speculum, conducted many experiments and surgeries on enslaved women without the benefit of anesthesia. Some of the women had over 30 surgeries at Sims’ hands, all without any pain relief whatsoever because of the false belief that Black people did not feel pain.

Hearing this history, I had to stop viewing the video and collect myself, because I immediately thought of the long history of claims that Autists do not feel pain, which culminated in testimony at an FDA hearing concerning whether it was okay to use electric shocks on Autistic children. Beyond the revulsion I feel at the fact that anyone needed to debate the ethics of using a Graduated Electronic Decelerator on children, I am nauseated by testimony and debate concerning “whether autistic people feel pain, if pain equates to harm, and if individuals with disabilities suffer any harm from being shocked.”

As I said, I don’t want to co-opt another marginalized group’s struggles, but there are so many similarities in the reproductive oppressions of Black people and those of developmentally disabled people that knowledge of the issues facing both communities, historically and currently, is crucial. Leaving aside the complexity of intersectionality—people like Çevik’s son who are both Black and Autistic experience exponentially increased struggles stemming from the union of two marginalized identities—understanding the systematic dehumanization slaves and their descendants have faced shines a light on the systematic dehumanization that developmentally disabled people face. I absolutely agree with Çevik that advocating for taking control of someone else’s reproductive rights is unacceptable, normalizing the removal of a disabled adult’s capacity to reproduce has devastating public policy consequences, and a book that would promote such ideas is an evil book.

It was with these thoughts in mind that I sat down to read To Siri With Love. I spent those three days reading it because I wanted to provide the most unbiased reading and review I possibly could. But I confess that I am completely biased when it comes to human rights issues. I had already witnessed the author calling Schaber a “brat” and snidely questioning their upbringing. Facebook and Twitter were abuzz with fury, with the words “transphobic” and “forced sterilization” appearing again and again. I opened the book feeling as if I were entering enemy territory.

To Siri With Love began well, with Newman explaining quite eloquently why PC insistence on person-first language is misplaced: “‘Person with autism’ also suggests that autism is something bad that one needs distance from,” Newman writes—and it’s perfectly fine to use the word “autistic.” But didn’t take long to learn why Newman was being called transphobic. Before page one, before the introduction, I got my first slap from Newman’s book in the author’s note.

Newman writes of a friend who wrote a book on parenting and used the singular "they" rather than "he" or "she." Never mind that using the singular they as a pronoun for unknown or generalized people long pre-dates the 18th century linguistic prescription movement. Newman declares it, as well as the use of the word “cisgender,” to be “ugly and imprecise.” I cannot argue for or against “ugly” as qualitative assessments are subject to the proverbial eye of the beholder, but for the great utility of the singular they one needs only look to the writing of William Shakespeare or Jane Austen. As for the cis-/trans- pairing, which dates back to the mid 1990s (or, as has been pointed out, as far back as 1914) it has as much linguistic utility as other pairings such as het-/homo- or masc-/fem-.

The book has many high points: Newman champions the right and necessity of Autistic stimming on pages 41 through 43, for example. It also has many low points, such as Newman repeatedly describing her son Gus’s interests as bizarre, even going so far as to suggest it “require[s] magic mushrooms to see it the way he does” (page 41).

Overall, I was left with the impression of an author who loves her children much in the same way she loves her dogs. She cares about their safety and welfare. She cares about feeding them nutritious food and ensuring they get sufficient sleep. She wants them to be happy and feel loved. She understands them only as well as one can understand a distinctly separate species. And she feels she has ownership of their bodies and minds.

In one passage, on page 35, Newman compares her intense interest in repeatedly reading and re-reading the opening words of Nabokov’s famous novel of chronic child rape, Lolita, to her son’s love of a fifteen-minute video of the wooden escalators at Macy’s department store. Newman insinuates that her preoccupation with a novel in which the middle-aged narrator begins by referring to a 12-year-old girl as “light of my life, fire of my loins” is somehow more elevated, wholesome, and comprehensible than the beauty of escalators: ridged plates neatly sliding through grooves to fold upon themselves and return to their point of origin, mystically creating interlocking platforms—shining metallic magic carpets endlessly conveying people on an intricate conveyor belt that looks just like stairs and does not abduct children to spend three years driving them across the country, raping them in hotel rooms while destroying their lives.

Yes, I can see how Newman might find Gus’ interests mundane and intolerably boring when contrasted to the delights of literary hebephilia.

That last sentence, by the way, was sarcasm. For those not in the know, sarcasm is a form of cutting humor. I explain, because Newman has repeatedly announced that Autistic people do not like her book because we are unable to understand humor and cannot see that her book is just so funny.

I had a private online discussion with Newman within an hour of finishing her book but before I began writing this review. My opening comment to her:
“I just finished reading your book about 15 minutes ago. I have spent the last three days reading it and taking notes. And I understand that it is probably frightening to talk to me. I'm a bit terrified, myself.”
Newman's opening comment to me:
“I was just saying, Maxfield, to someone online, that what NT people liked about this book was that it looked at the funnier side of things that are often, in books about autism, seen as upsetting. But it is difficult, often impossible, to explain humor. I am not sure that people here see the difference between laughing ABOUT something and laughing AT someone.  There is a huge difference. I laugh at a lot of things -- at myself, at my family, at Gus -- but they are not the butt of my jokes, if you see what I mean.”
This is not Newman’s first or last time to insinuate that Autistic people do not like her book because we cannot understand humor. Not only is she making blanket assumptions about our abilities, she is engaging in one of the most classic forms of gaslighting: telling others they have no sense of humor, or don’t know how to take a joke.

I just don’t think it’s funny to say (repeatedly) that no one will ever want to date your son, and that if they did have sex with him the result would  be so ludicrous it would require a Benny Hill soundtrack to accompany it (page 116). I don’t think it’s funny to say that you are glad vasectomies can be reversed because you will be able to get one for your son when he turns 18 and reverse it when he’s 35 so you can have grandchildren (page 117). And I don’t think it’s funny to tell us that you’re able to bond with your non-autistic child despite the fact that “the overlapping area in the Venn diagram of our common interests is the size of a pinhead” (page 39), but your Autistic child bores you so much that the only remedy is to get drunk to escape “discussing weather, trains, or Disney villains” (page 40).

Two nights after our first long chat, I was two-thirds of the way through writing this review and feeling mentally and emotionally drained. You see, our lengthy private discussion started off on a rough tone and for quite some time I felt that Newman was evading actually talking about the issues I had with her book. Early in, she seemed to dismiss the entire possibility of talking, writing,
“Max, you are the reviewer so you write exactly what you want. I’m sorry we don’t see this the same way. I hope you write the book about your life that best represents you and people you love. That’s all any of us can do.” 
That was where we found our volta, our fulcrum, our swerve. Our non-conversation took a turn into real connection.
“I have written books about my life,” I typed to her. “That's part of why I don't want to attack you on this. I know what it feels like to put personal life details out there. Most of my family will no longer speak to me because of things I have written about my grandfather.” 
And then we started to talk. We left talk of her book aside and just chatted—mostly about me, since I already knew so much of her life from reading her book. I came away feeling conflicted at first. We had talked until bedtime and then stayed up another hour, talking some more. We said goodnight by sending one another animated animal gifs. I liked her and I sensed that she liked me, too.

But ... her book. Her book is evil.

Yes, evil, and I do not use that word lightly. Despite being an atheist, I have drawn my understanding of the definition of evil from reading Augustine. In my understanding—slightly modified from the Augustinian concept—“good and evil” are purely human constructs that do not exist in nature. “Good” is anything that increases the sum total of compassion and caring in the world. “Evil” is somewhat akin to the scientific definition of cold as the absence of heat. Just as the Kelvin temperature scale has an absolute zero, so does the measure of human goodness have an absolute zero and that is where one finds evil.

To Siri With Love is an evil book because it normalizes the notion of owning another human being. When we discuss the ethics of having one’s pet neutered, we talk about responsible pet ownership, the fate of stray animals, overpopulation of cats and dogs but those who personally identify with the notion of a cat’s loss of “manhood” are dismissed as overly sentimental and irrelevant. The dog or cat does not get a vote in the matter.

Newman seems to grow agitated whenever I use the word, “sterilize,” because she never wrote about permanently neutering her child like a pet, but rather delaying his ability to procreate until she felt he was ready. I, however, do not see those two positions as occupying different ethical zip codes. Both are reprehensible. The idea of sterilizing one’s child is not something isolated or unusual. Forced sterilization has been explicitly legal in all fifty states since the famous 1927 Supreme Court Case, Buck v. Bell.

Justice Oliver Wendell Holmes, Jr. used the precedent of mandatory vaccination to justify sterilization of those “manifestly unfit” to prevent society’s need to “execute degenerate offspring for crime” or the social cost of letting “them starve for their imbecility.” The decision was eight to one, with Justice Pierce Butler, a staunch Catholic, the lone dissenter. As a result of the court case, Carrie Elizabeth Buck was permanently sterilized.

Although many people remain appalled by the ruling, Buck v. Bell has never been explicitly overturned. In fact this very month the state of Washington has been working on creating forms to make it much easier for parents to pursue sterilization of their children. I believe that sterilizing people because of their I.Q. or developmental disability is evil, just as is sterilizing people for their race, religion, or other disability—all of which have been enacted in the United States within my lifetime. I agree with Julia Bascom, president of the Autistic Self Advocacy Network (ASAN) who recently said in her ASAN Gala speech, “there is not an IQ test that determines when human rights are relevant.”

To Siri With Love is an evil book, just as Çevik wrote, because it makes it easier for parents to choose the reprehensible option that is legally open to them, that of having their child sterilized. “Wait,” you may be thinking, “you said earlier that Newman had good things to say about identity-first language, the importance of stimming, and more. Yet you say that evil is the absence of good. How can a book with such good things in it be evil?” To you I respond that those apparently good things in To Siri With Love merely bolster the core of evil it contains by serving as the sugar coating that makes a toxic pill inviting to swallow.

Critics have praised the book as courageous, honest, moving. Those qualities make it more likely that parents will feel validated in choosing to sterilize their child, just as they read about in that courageous and moving book. Newman lays her fears bare in ways other parents can’t help but connect with. From page 17 through page 28, Newman ruminates on the causes of autism and lists out the many ways she and her husband could have been responsible for Gus’ autism. This line of thinking has likely kept many a neurotypical parent of an Autistic child awake at night, filled with self-recrimination. On pages 11 and 12, Newman writes a particularly evocative passage about the paralyzing grip of fear, comparing it to the last moments of the live mice she fed to her childhood pet boa constrictor, Julius Squeezer. I felt the cold grip of horror and fear, reading that passage. What parent who had experienced fear upon learning their child’s diagnosis would not feel an immediate kinship with Newman, upon reading those words?

So I stand firm: To Siri With Love is an evil book, and it is evil because of those passages of proclaimed love for Gus, not in spite of them.

But Judith Newman is not an evil person. Evil is the absence of good and I do believe Newman has good in her. Like all of us, she is complex. I hate her book, as I hate all that is evil. But I do not hate Newman. Last night the library closed and I turned off my computer and bought dinner: popcorn, and a bottle of merlot. I only drink alcohol two or three times per year; it takes more than a boring child to encourage me to reach for a bottle. It took coping with my growing cognitive dissonance about Judith Newman and her book.

Under the influence of the grape, I turned to Newman once more. “Still working on the review. Hoping to finish tomorrow. It's tearing my heart to shreds.” We chatted for a couple more hours. I could never have predicted it, but Newman encouraged me to finish my review of her book and to write it honestly. “It’s important for you to write what you think,” she told me.

She also told me again that we do not understand her. “I have gotten a great many notes from autistic people, and autistic parents, who are afraid to say that they really enjoyed it, and that they knew I wasn't going to sterilize my son.”
“He’s not getting a vasectomy,” Newman told me later in the same chat. “It’s ridiculous. But I also think I would be an irresponsible person and an asshole if I didn't think about what's going to happen to my son when I'm gone. And what would happen to a CHILD of his when I'm gone.”
The thing is, so many of us—Autistic and allistic alike—did come away from reading her book with the strong feeling that she was going to pursue that vasectomy she kept mentioning. And no matter how ambiguous Newman’s feelings about her child’s reproduction may be, it is unethical to permit that same ambiguity to surround her discussion of the topic.

Several times, Newman mentioned censorship and said all writers must be free to say exactly what they think and feel. I, too, am against censorship but I don’t believe censorship is the issue here. My father had a folksy saying that he had probably gotten from his own father: “your right to swing your fist ends where  my nose begins.” Newman has a right to say exactly what she thinks and feels, but that right ends at the point where she does harm to me and my people. Yes, she has force of law behind her as the Supreme Court decided in 1969’s Brandenburg v Ohio that speech can only be prohibited if it is “directed at inciting or producing imminent lawless action,” and also “likely to produce such action.”

And, as much as I hate it, sterilizing one’s developmentally disabled child—whether permanently or temporarily—is not illegal. Newman has the law on her side. But it is a law I resist, just as Martin Luther King Jr. said we must when he wrote from the Birmingham Jail:
“One may well ask: 'How can you advocate breaking some laws and obeying others?' The answer lies in the fact that there are two types of laws: just and unjust. I would be the first to advocate obeying just laws. One has not only a legal but a moral responsibility to obey just laws. Conversely, one has a moral responsibility to disobey unjust laws. I would agree with St. Augustine that 'an unjust law is no law at all.'”
But, upon reflection, I find that I do not want to censor Newman. She says we do not understand her, and that may be true, but she stands by her words because she does not understand us. She takes it for granted that people say dangerous things. She told me she will continue to block every person who writes a death threat to her, yet she does not grasp that what she has written is implicitly a death threat for an entire people and we do not have the luxury of simply blocking her book.

She loves Gus and wrestles with the reality that some parents do not love their Autistic children. She told me that some people should never have become parents, and by that she meant those parents who harm and murder their Autistic children. But she naively assumes that no real harm can come from her words because she takes it for granted that most families are like hers.

This is a natural human tendency, taking our good fortune for granted. For years I took so many things granted because my skin is white. There are still things, currently unknown to me, that I take for granted because my skin is white and I have never known the struggle and oppression People of Color face every day.

When one is part of the group that has set the rules for what is “normal,” “natural,” and “healthy,” as Judith Newman is, one isn’t grateful to be considered those things any more than a person who has never experienced respiratory distress is grateful to take each breath.

Last night, Newman urged me to finish writing this review, telling me to pretend she would not read it and adding that she would not ... at least not for a while. She is feeling raw and wounded and misunderstood, and cannot understand why so many people are so angry with her. We discovered with surprise that we had independently chosen the same dinner that night—popcorn and wine. Despite massive differences, she and I are so alike and we are also each utterly convinced that we are right and that the other just doesn’t understand.

I don’t want to censor Newman, but I do fervently want her to change her mind. I realize that I don’t have the right to force that on her any more than I believe that she has the right to tell the world she wants to take control of her son’s reproductive choices. But I wish it anyway, because my heart is broken at finding a potential friend in someone who has written a very evil book.

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.