Wednesday, November 23, 2016

Never Again: Why The Incoming U.S. Administration Is Dangerous For Autistic People (And So Many Others)

Sparrow R. Jones 
unstrangemind.com

“These are dangerous days / to say what you feel is to dig your own grave.” -Sinead O’Connor

Sparrow R. Jones
[image: Portrait photo of a white person with short
dark gray hair, glasses, and a maroon button-up shirt.]
I blame myself.

I should have campaigned more strongly. I should have written about the political landscape and how it affects disabled people in general, and Autistics and those who love us specifically. But I have always been told that one shouldn’t talk about politics, sex, or religion in polite company. I’ve already broken the sex talk taboo so many times over that I was reluctant to tread on religious or political ground.

And I didn’t really think he would win. I honestly didn’t. Everyone I’ve spoken with who voted against him has said the same thing: we didn’t see this coming.

Wow, were we ever wrong. Donald Trump won the election. Please forgive me for not talking about politics before. I can rationalize that choice all I want, but I really have no excuse: I spent ten years at university studying political science and associated topics (history, applied economics, psychology, sociology). As a former educator in political science, I had a responsibility to talk about what was happening. Of course I couldn’t have stopped a Trump presidency single-handedly, but I regret not trying harder than I did.

Not only was I intimidated about the social norm against talking about politics, but I was intimidated by Trump’s bully tactics. And, I confess, I was intimidated by the response to Trump from the broader liberal community. I felt like I got repeatedly thrown under the bus to provide traction in the political mire, and I feel like I’m still being thrown there now that things have reached a crisis point.

Since the election, I have been seeing lots of people who voted for Trump (including my own blood relations) calling for us to unify under our new president-elect. Don’t worry: I am not going to ask that of you. The same people who are beckoning to us now are the ones who railed against Obama for eight years. Remember all their dissent and anger? Yet somehow they pretend not to understand why we are angry and frightened now.

I am going to ask for unity among all of us who are so vulnerable in the face of a Trump presidency. I do not believe this election is “business as usual” for the United States. As an adult, I have lived through every presidency from Ronald Reagan forward, and I have never felt this to-the-bone level of fear at the election of a new president.

I am going to just go there and say it: the voting populace of the United States has elected a white supremacist who is sexist, homophobic, ableist, transphobic, xenophobic, bigoted and a shameless liar, and who could propel us into the next world war, the next civil war, or both.

There is a saying: “history repeats itself.” George Bernard Shaw pointed out that, “if history repeats itself, and the unexpected always happens, how incapable must Man be of learning from experience.” Philosopher George Santayana left us with his most famous statement that, “those who cannot remember the past are condemned to repeat it.”

It is my firm belief that history is repeating itself at this moment.

My training as a political scientist and my Autistic skills of pattern recognition have combined to make me realize that we are in the process of repeating what happened in Germany of the 1930s. I already know what you’re going to say: you’re going to accuse me of violating Godwin’s Law. I have three things to say in response to that:
  1. Godwin’s Law merely says “As an online discussion grows longer, the probability of a comparison involving Hitler approaches 1.” In other words, the longer people talk online, the greater the likelihood that Hitler will be mentioned. There is no implicit judgment in Godwin’s Law. Just because this discussion is reaching a comparison involving Hitler more rapidly than any other discussion I have taken part in before -- excluding one graduate class, CMP 4481, Rhetoric of Hitler and Churchill, which pretty much ‘went there’ in the catalog description before anyone ever opened their mouth -- does not mean that the comparison is unjustified. Which brings me to the next point:
  2. Citing Godwin’s Law can be a way to shut down someone who is making an unjust comparison to Hitler, but it can also be used to try to shut down someone who is pointing out an unpleasant, frightening, or offensive truth. I believe those who will be tempted to fling Godwin’s Law at me over the things I am about to say are not ready to hear these words. Their citation of Godwin’s Law reflects more on them than on me.
  3. Back in December, Godwin himself said, “If you're thoughtful about it and show some real awareness of history, go ahead and refer to Hitler when you talk about Trump. Or any other politician.” So, with Godwin’s blessing, I will proceed.
If you know anything at all about how World War Two went for minorities -- racial, ethnic, religious, sexual, the disabled -- you will understand why I am terrified, and why I am saying right now that we have to band together, all of us. We need unity. Not unity behind our new president, but unity against the human rights violations that our President-elect shows every sign of bringing to us in full force. Hitler took power by declaring a state of emergency, due to violence. The Reichstag Fire Decree and the Enabling Act gave Hitler the same incredible amount of power that Donald Trump could easily pluck like the low hanging fruit it is, by pointing to current protests as a violent danger to the State, and declaring Martial Law.

The coming administration is dangerous for Autistics and other disabled people (and our families) for many reasons, including Donald Trump’s openly mocking a physically disabled reporter, and calling Deaf actress and activist Marlee Matlin the R-word. He has repeatedly demonstrated a lack of respect for the dignity of disabled people at a level rarely seen outside of grade-school bullies.

Although one of Trump’s campaign promises was to preserve Medicare, Medicaid, and Social Security, he has already chosen advisors who want to bury those programs. Sam Clovis is on record as supporting privatization of Medicaid and Social Security, a move that would leave the door open for moves like Texas and Alabama have already made: removing access to Medicaid for poor families that earn more than $3,629 for a family of three. John Mashburn also wants to cut funding, and has specifically targeted families with disabled children. Mashburn accused parents of children with neurological disabilities of “gaming the system” and claimed that 53% of children on SSI are not really disabled because they are not physically disabled. Have no doubt that the coming administration wants to take away your Autistic child’s benefits. Eleven percent of children receiving SSI benefits are Autistic, 21.4% have other developmental disorders, and 8.9% have an intellectual disability. These are the children John Mashburn wants to target.

The coming administration is dangerous for People of Color because: Trump has repeatedly made so many racist statements I can’t even begin to include them all here. He criticized the Judge who presided over the Trump University case, saying Gonzalo Curiel wouldn’t be fair because “he’s a Mexican.” (Curiel was born in Indiana.) As part of his stance against immigration, Trump repeatedly said most Latino immigrants come to the United States to rape people and commit other crimes. Trump was one of the most prominent “Birthers,” who questioned Obama’s citizenship and right to serve as President -- typically a ruse to cover their rejection of a Black man as President of the United States. Donald Trump has been sued twice (1973 and 1976) by the Department of Justice for refusing to rent apartments to Black people. Trump has a long history of complaints against him for mistreating Black employees, and in 1992 he was fined by the New Jersey Casino Control Commission for racist practices. He even managed to insult and stereotype Blacks and Jews at the same time when he said, “Black guys counting my money! I hate it. The only kind of people I want counting my money are little short guys that wear yarmulkes every day.”

In February, Trump refused to condemn the KKK and their former Imperial Wizard David Duke for endorsing his presidency, claiming he didn’t know what the CNN moderator was talking about, and that he had no idea who Duke was -- a statement that has since been proven to be a lie. Even if Trump really does oppose the KKK, how can we trust a candidate who has garnered such heavy support from white supremacist organizations, with a prominent KKK leader telling a television reporter that “The reason a lot of Klan members like Donald Trump is because a lot of what he believes, we believe in”?

Donald Trump’s presidency will be dangerous for Muslims because Trump has promised to build a registry of U.S. Muslims. Recently it was announced that the incoming administration believes such a registry would be a Constitutional move, based on the court precedent of the Korematsu case that defended the Japanese internment camps during World War Two. While Dani Alexis brilliantly shreds the use of Korematsu as grounds for a Muslim registry the fact that Trump is so heavily targeting all Muslims makes him a threat.

A frightening development stemming from the U.S. having elected Donald Trump is that his hatred is enabling others who are filled with hate toward various minorities. Stories of insults and attacks from across our country, with the attackers mentioning Trump’s name, keep pouring in because the attackers know Trump strikes fear into people’s hearts. The President-elect, the future leader, is by example instructing his followers as to the type of behavior and language that are now appropriate. He has modeled mocking disabled people. He has modeled rape and abuse of women and children. He has modeled racism, xenophobia, homophobia, transphobia, and more. And we are now seeing citizens act in similar ways, and worse. The Southern Poverty Law Center (SPLC) has reported over 700 Trump-related incidents of hateful harassment since the election. By contrast, the SPLC has recorded only 27 anti-Trump incidents.

I am calling for unity against the incoming administration's assault on everything that has actually made America great. An old saying claims that democracy is two wolves and a sheep voting on dinner. What makes the United States shine is our assertion that sheep have rights. Not that we have  been perfect in recognizing or protecting those rights, by any stretch of the imagination, but the history of the United States has been a narrative of struggle and advance in declaring rights for Black people, workers, children, the disabled, women, and many other marginalized or disenfranchised members of our society. The wolves and sheep may have been voting together, but they have been doing so in a political culture that ideally works to honor sheep’s rights. Trump’s idea of making our country great is to roll back all that progress and put mutton on the menu.

I am calling for unity because I do not currently see it. During the campaigning period, slams against  Trump unfortunately and too often used vulnerable minorities as a cudgels against him. For example, there were the statues that body-shamed him. As a trans man, it really hurt to see how many of my liberal friends were gleefully mocking a man, by mocking his genitalia. Thanks to my connective tissue disorder combined with the current state of technology in genital reconstructive surgery, I will never have genitalia that look and function the way my friends insist the genitalia of a real man, worthy of dignity, should. Do you think people should laugh at me and publicly shame me for that? When I tried to tell my friends how terrible that statue and their laughter made me feel, I was casually dismissed as being too sensitive or not getting the joke. Body shaming is not funny to me, and using it against someone because they are racist, sexist, ableist, homophobic, etc. is not a valid justification -- because vulnerable people are hurt the most by such acts.

Now I am seeing people talking about how “stupid” (or, worse, how R-word) Trump is. This is unacceptable. Do not use intellectually disabled people as a verbal weapon. People are also rushing to declare Trump “mentally ill.” It is also not acceptable to sacrifice our community members with psychiatric disabilities in your hurry to insult Donald Trump.

I went to an anti-Trump protest last Friday night, and none of the signs talked about his ableism. None of the chants mentioned his ableism. We people with disabilities were invisible to the protestors. The only people I see still talking about Trump’s danger to disabled people are usually disabled people. We have been left out in the cold.

As Benjamin Franklin famously said, upon the signing of the Declaration of Independence, “We must, indeed, all hang together, or assuredly we shall all hang separately.” The slogan that unites those in opposition to Trump and the ignorance and hatred he stands for is “Love Trumps Hate.” I would suggest that we put that slogan into action: Factions of hatred are rallying around a powerful leader right now; we must counter by rallying around our most disenfranchised, most vulnerable members.

We must remember to always center those who have the most to lose from Trump’s leadership -- the impoverished who will die without health coverage, Autistics who face having crucial assistance stripped from them, People of Color, LGBTQIA+ people, Muslims, Jews, and more -- in our movement. We must leave no vulnerable person unprotected and unrepresented in our quest for justice. If we do not seek justice for all, we will secure justice for none.

We absolutely must unite. We must continue to remind others who are against all the other threats against the fundamental human rights of women, gender and sexual minorities, People of Color, members of various religious groups, and more that we are part of the team. We must remain sensitive and compassionate toward all the other groups of vulnerable people who are now poised to go through a metaphorical meat grinder. We must stand together against all injustice and we must all fight for each other’s right to live and thrive. It is the only way forward.

We know what happens if we do not fight against the threat of authoritarian dictatorship: history’s lessons have taught us about the concentration camps. More specifically, for those of us who are Autistic or have loved ones who are Autistic, we cannot forget the lessons of Hitler’s “trial run” of the death camps: the Aktion T4 Program. Yes, love truly does trump hate. But love can only be victorious if we enter battle with the cry, “never again!” in our hearts and on our tongues.

Monday, November 21, 2016

Autistic Insights on Meltdowns, Aggression, and Self-Injury

Brent White and Lindsey Anderson
Ala Costa Transition Program

A Presentation at Support For Families in San Francisco, California, which also included Dr. Clarissa Kripke's presentation Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices.

Lindsey Anderson, Brent White, and Nora
[image: white woman with long straight brown hair,
in front of a white man with a black cap, glasses,
and a silver beard, holding a small white dog]
Brent: The Ala Costa Transition Program, which serves students ages 18-22 with developmental disabilities, is 100% community based. We understand that when “behaviors” happen in public, sometimes really big ones, it adds a whole different layer. We want to be really careful in how we think about those scenarios. So we came up with guidelines that we use in our program, and that hopefully you can think about while an autistic person is overwhelmed and having trouble coping.

It’s important to remember that when someone is struggling, they are not being “bad” or trying to do something to you personally -- even though it can feel like that, especially if they’re screaming at you or making you angry.

By the time “behavior” happens, it’s too late to stop or redirect. So you want to be kind to the person who’s having trouble, even if it’s hard, and can be super scary for you. Be empathetic: it’s about them. Even if it happens in the community, and even if you have all these community members telling you what to do, and saying “that shouldn’t be happening.”

When someone is having a meltdown, they’re probably looking for a place to be safe, so they can stop feeling the way they’re feeling. As parents or staff, we want to get everyone else away. If there’s a crowd, we say, “Please go away, let us deal with it.” So if there’s a way for the person having a meltdown to choose a safe space, let them choose that.

It’s really hard on your own body, witnessing a person experiencing that much trauma. Especially if you’re in public, like in a grocery store or a Costco. That anxiety is hard on your body, and making decisions based on your anxiety can make things worse. So, if community members are gathering around and asking questions, that’s their problem. Your focus should be on the person in trouble.

While meltdowns are happening, that’s not the time to ask someone “what’s wrong with you,” chastise them, or ask them questions — that’s all useless. Again, be as empathetic as possible. Keep yourself as quiet as possible. Don’t shame them for their behavior. You can ask them questions afterwards. You can also praise them for how they emerged, and say things like “I love how you stopped and were able to get yourself away.”

You can also say, “When you’re feeling that way next time, here are some things that we can try….”

Lindsey: It’s just miserable for the person having the meltdown. When I’m anxious, it feels really terrible. And it feels terrible for the person, such as a parent, witnessing it too. So it’s really important to have an abundance of compassion for yourself, to take a big deep breath -- and to also know that the person experiencing the meltdown is feeling one hundredfold worse than you do at that moment. If you can be compassionate and loving towards yourself, then you can extend it to that person who needs your support.

Brent: If you’re in that situation, the more you try to be mindful, the more you’ll have a chance of handling the situation well. But let me also tell you a secret: Neurodivergent and other autistic people, in my experience, are really great at reading non-verbal cues -- so they will feed off your anxiety. That’s why it’s important to be mindful; to be quiet, calm, and kind. Even if you’re not saying anything, if you’re anxious, they’re feeling it.

Lindsey: We autistic people feel what you’re feeling, even if you’re not giving us those signals with your voice or face. We sense whatever you’re feeling in your heart and chest. (This is different from not noticing that people are picking up on us, and asking them out for dates!)

Brent: (Laughs) That is a completely different thing.

I’ve worked in this field for fifteen years. And there are a lot of little things that parents might not understand. We have participants who flap, and verbally stim, and walk on their toes -- and for some reason some people think of those things as “behaviors” -- and they are not. There’s nothing wrong with them -- that’s how they communicate, that’s how they interact with the world.

Lindsey: What a person is doing doesn’t have to make sense for the person not experiencing it. For instance, Brent is not using a microphone right now, but I am using one, and that’s OK. People need to be able to make their own choices, even if other people don’t understand or share their reasons for making them.

Brent: Actions that neurodivergent people engage in that other people consider odd aren’t always actually problematic. Someone “bouncing off the walls” may actually be engaging with their environment fully -- and that can be really beautiful.

Self-determination is important. People being able to choose their own coping strategies is really important, really empowering. They need to be able to make their own decisions about what they’re doing, feel like they have some control when they’re otherwise out of control.

But we will make suggestions, like “Do you want to go outside, do you want a drink of water, do you want to listen to some music?” We don't suggest them that quickly of course, but we’ll give lots and lots of choices. That way, when someone needs support, we can say “what choices do you have?” Even when we’ve had people having meltdowns that look really bad, they’re actually choosing their own safe space and way to do it. And after a few times, they really feel like they have agency and control. And that’s what’s most important.
 
Really, everyone here has probably had a meltdown of some sort, due to grief or just being a puddle -- it’s a terrible, terrible feeling, and it’s one I personally live in fear of. It’s really shameful to feel like you’re out of control. Giving control and agency can help, and knowing that lets me personally be in the world, instead of just wanting to hide.

Lindsey: Using these kinds of tools and approaches can reduce the amount of shame your child or the person you’re supporting experiences in the world. Shame plays a huge role in the way I personally experience my emotions, it’s something I’m overcoming -- I’m unlearning a lot of things that I learned as a child from society and from my parents and from the people around me. So if you can nip that in the bud, it can heal the community you’re around and it can also set your child up for success in the future.

Brent: When I was a kid and feeling overwhelmed, it was like being in the middle of a tornado of feelings. I would feel shitty, but I wouldn’t know why. I would go to my mom and ask for help -- and she would react by hitting me or shaming me.

Autistic kids sometimes need help understanding things about themselves and in making preferred choices -- I needed someone to ask me if I was hungry, or if I needed to go outside, and to recognize the things that usually upset me.

My mom didn’t recognize that I needed to eat. She thought I was having a temper tantrum. And that happened a lot when I was a kid because I simply didn’t have the context to put feelings to words to language and to be able to say to someone, “I’m hungry.” (And sometimes, I still don’t.) Autistic kids don’t always have the ability to match feelings or needs to language. Asking them questions can help.

It’s important to legitimize the feelings of autistic kids. There is nothing that feels as bad or as frustrating as having a thought or a feeling and not being able to express it. It may be the hardest thing about being neurodivergent. It’s a common problem.

Making friends can be really hard. It’s really hard for most autistic people. If kids are not responding to the friendship overtures of an autistic child, you can help the child understand that it may because of communication difficulties, and that’s not their fault. Focus on not shaming. And give them some time to respond.

And also make it sure that this is just something that’s happening, and that’s part of being aware of one’s disability: If your kids are autistic, tell them they’re autistic! There shouldn’t be any shame about that, either -- in fact, there’s power and knowledge in it, in knowing that it’s not your fault. That is one thing I wished my parents had told me.

These are some of the guidelines Ala Costa’s adult Programs use for working with Neurodivergent youth in the community

Brent: ACAT Ala Costa is a 3:1 program for young adults transitioning out of high school and into the community, which is all full of chaos -- it’s beautiful.

Lindsey: 3:1 means three students to one teacher.

Brent: Another thing to consider when working with people, or your kids, is the concept of “slowness.” Understand that Neurodivergent people process information differently and that processing time is different. So when you ask a question, wait as long as you possibly can for an answer -- until you’re bursting -- and then wait a little longer.

If you are not neurodivergent, the questions you are asking may make sense to you, but may make no sense to the neurodivergent person. I get that a lot. People ask me questions, and I’ll think about it a long time, I might start to panic. So you want to wait, and be patient. A really beautiful way to be in the world, with a disabled person, is to be super patient -- that’s so respectful.

Neurodivergent people process information differently, and they also process things that other people aren’t processing. If people noticed the sound of the lights in this [conference] room the way I noticed them, they wouldn’t have these lights at all. I am also hearing the sounds of the environmental system, probably a lot of other people in the room are not.

One of the biggest things: Presume Competence. Even if someone is doing something differently than you do, that doesn’t mean they’re doing it wrong. Everyone has their own way of doing things. The way Neurodivergent people get from A to B in the world is a lot different than the way neurotypical (NT) people do it. We don’t use the same systems and benchmarks. And it often results in amazing ways to adapt.

When I was growing up, I felt like neurotypical kids had all read the same script, and all knew what they were doing -- and I just didn’t understand any of it! I had to figure it all out in my own unique way; and not just one or two things, but every single aspect of my life. It’s a million little tiny things that you do in your life. Maybe if you’re neurotypical and you’ve read the script and you’ve figured it out, those things don’t matter to you, but probably for your kids, a lot of that stuff is not going to make sense.

When you’re talking about goals, and where people should be, think about how they’re adapting to the world, and really appreciate how they’re adapting to the world. And if you want to praise them for something, you can say “the way that you’re doing this is not the way I would do it -- but it’s amazing that you did it that way.”

It is really important not to say that results that are correct for that person are incorrect if they actually make sense! It’s especially important to presume competence in this way when it comes to testing, when the testers expect things to be done a certain way.

Lindsey: We also live in a world that doesn’t really like chaos because chaos means pain, and chaos means “too much, too much change.” But sometimes the way our brains work require chaos. We have to have that chaos -- and what may be chaos to other people are often beautiful and meaningful to us. And I think it can also be beautiful and meaningful to other people too! But we like to stick to rules in our society. And when we break those rules, we’re not trying to disrupt the system -- we’re trying to survive a system we’ve been put in that doesn’t give us the supports we need, so we have to create our own systems. No one gave anything to us; we had to figure it out ourselves. So respecting that process -- supporting and encouraging and appreciating those systems is so, so important.

Which leads us into the next topic: It’s OK to be different. I encourage it, I love it. Let that freak flag fly high! It’s the responsibility of rest of the world to adapt and deal with our differences -- we adapt to the world each day, and I don’t think it is too much to ask the world to meet us halfway.

If your child is stimming or even having a meltdown in public, and strangers are scowling at you, forget them. They are unimportant. This is our “normal.” We need to be positive in that way. And it’s not just the strangers; it can be grandparents, it can be family members: They want you to get that kid “under control” or “stop that screaming” or “stop being a brat!” People see differences in such negative terms, but we have the opportunity every day to reflect the joy of difference.

Brent: One of my adult clients laid down on the floor right in the middle of the tomato section at the Berkeley Bowl grocery store, because he needed a break. He was of course in the way of Berkeley people getting to their organic tomatoes! Our staff stood next to him so that no one tripped over him. They weren’t going to move him or touch him. The staff let the client do what he needed to do to feel safe. The shoppers got to experience that and interact with a situation. They got to be uncomfortable for 15 minutes and see that the world didn’t come to an end.

Shannon (moderator): My son loves the Monterey Bay Aquarium, and I consider it to be one of the most accommodating places in our area. One of his favorite things to do is to lie down on the floor and look up at the anchovies swirling around in their tank.


[video: close up of a school of anchovies
swimming in a cylindrical tank.]

I used get nervous, because typically in situations like that people will approach me in a concerned but patronizing way, and ask if we need help. But the Aquarium staff — they tend to approach and ask what’s going on. And when I told them, “He loves being able to do this. He’s so happy!,” their response was, “Well, we love it when our guests are happy.” And I was so shocked and grateful, and could only squeak out a “thank you!”

The more we’re out and just being ourselves and not hurting anybody, I think the more we can be comfortable being out and about.

Brent: I think that’s a great thing parents and caretakers can do too. It’s that idea of positive regard and how we reflect back to the world what’s going on. So if a kid’s lying down in the middle of the aquarium, and if his mom is beaming because that’s a beautiful thing, that makes such a difference.

One of the most controversial parts of our program is our belief that Neurodivergent people have a right to take risks! I’m not talking about dangerous risks. I’m talking about allowing people to learn by failing, and how important that is. Because that’s one way people learn, by failing. We all learn by failing. We all have the right to take risks and the right to fail. We all get to screw up; autistic people and their parents too.

It’s nonsense that you should know exactly what to do when your kid has a meltdown in Costco or the bank. You have a right to be confused, and do things the wrong way. That’s how we learn. This is especially important for Neurodivergent people who often have to find their own way through the world. Try, fail, then try again and again, until we figure it out.

In our adult programs, the right to fail is an important ethical component -- for me, for the staff, and for the participants. It also ties in with self-determination and self-advocacy. We can’t do anything unless we believe we can do it!

There is too much learned helplessness in Special Ed environments. You can’t learn to do something for yourself if no one ever lets you do that. Which means that others need to stand back, to let you do that. When people are allowed to fail and learn from their failures, it builds confidence. It builds belief in oneself. It’s not enough for anyone else to say, “Yes, I believe you can do it.”

Lindsey: Historically, disabled people are too often taught that they’re fragile and that they aren’t allowed to take risks because something might happen to them. So they never have the opportunity to learn from mistakes. With disabled people, it’s important to let us screw up. Let us go to the grocery store, try to buy something without money, and be told by the cashier that we can have the item because we need more money -- instead of doing it for us or giving it to us because we’re disabled.

I think about this a lot with my very visibly disabled clients and program participants. We go to the store nearly every day, and buy lunch as part of the program. Sometimes we’ll have a participant who really wants a piece of delicious pizza and a soda but they can only afford the pizza. So what happens then? That’s a time when they have to make the decision to buy something they can afford, because that lets us learn about money. That lets us learn that if we can’t get what we want, then we have to figure out something else. Because what are they doing to do when they are dealing with people besides parents and caregivers?

Brent: Independence means different things for different people, and I prefer to frame it as “less dependent.” Anyone can create situations and spaces where people can be less dependent. And for some people that might mean spending three minutes alone, for others that might mean living on their own.

Inclusion

Brent: Inclusion is usually constructed around the idea of the disabled person presenting as “normal” as possible. But I think inclusion is a two-way street, which means the neurotypical world needs to meet the neurodivergent world halfway. The world belongs to disabled people too, but we’re often excluded from it. We always have to force our way into it.

Inclusion should not mean invisibility. The historical narrative of disability says that we’re broken or diseased -- that there’s something wrong with us. People with intellectual or developmental disabilities are always being separated, whether by institutionalization or isolation. The only way to break that down is by all of us educating ourselves to counter that narrative.

I really want to see a world where when your kids get older, they won’t have to struggle to fit in the way I did. I want it to be just a little bit easier for them, and then a little bit easier for the next generation too.

Lindsey: Brent and I didn’t have people talking about this when we were younger. So it is really healing for us and really important to have this platform. But it’s also really important to have a wonderful audience like we do today -- one that is willing to listen, and willing to take this message back to their home, office, job, school and implement what we’re talking about so we don’t have to go through the same pain, generation after generation, of Neurodivergent people.

In terms of our own experiences as young people: Growing up, I always knew I was different, but I was never given an autism diagnosis even though people were always talking about my behaviors. As wonderful and loving as my parents were, everyone always thought I was throwing tantrums, that I was just angry, overly sensitive, and overly emotional.

Something I would have told them if I could have, and that I’m telling you now: It’s important to pay attention to what is going on in that moment of having a meltdown -- when we’re feeling really uncomfortable. It’s important to have compassion in that moment -- both for your child when they’re not feeling well, and for yourself. I’m not overly sensitive, I’m hypersensitive -- I was taking on both my own emotions and the emotions of everyone else in the room, and was incredibly aware of the way people acted around me because none of them acted like me. No one stimmed, or threw their hair around, or jumped around like I did -- so I modeled what everyone was doing around me, and I learned to keep all my really uncomfortable, painful feelings inside. For twenty-one years.

Now I have a community. I even learned I was autistic by talking with other autistic people. That self-knowledge has helped me understand coping mechanisms. I don’t have awful meltdowns anymore. And my anxious feelings, well they don’t really happen unless I have to speak in front of people!

Talking about how I feel is a huge deal, and that’s why I talk about my experience -- so people don’t have to go through what I went through. As an adult I am way more autistic than I’ve ever been, but also happier than I’ve ever been -- because I understand myself and have the supports and coping methods I need. Knowing my access and support needs allow me to support others in my community.

Brent: My experience is really similar. I started going to therapy in my 40s, and when they asked me to describe my childhood, I said I was always “scared,” because I didn’t understand what was going on around me.

That’s the thing about being autistic and undiagnosed -- it’s scary, because you know you’re different, but you don’t know why. What was really debilitating was being told everything I thought and felt was wrong. It’s a really scary feeling. It’s like you don’t exist. And I didn’t understand how I existed as a human being, because I wasn’t like anyone else. I didn’t relate to anyone, because there was no one who was like me. Sometimes I felt like I was either invisible or on a ten-second delay from the rest of the world. Especially having thoughts and feelings that I couldn’t express because I don’t think in words. The world is a connected and beautiful place that was in the front of my vision the whole time, yet I couldn’t communicate that.

So I went through a lot of therapy and got a lot of misdiagnoses but wasn’t OK until I discovered the autism community.

Now I have a community, I know people who are like me. It took me fifty-something years to get here, but I’m here. And the reason I come out here and do talks like this that make me uncomfortable is because I want that for other people: I don’t want anyone to spend their life feeling confused and depressed, invisible and misunderstood, because they can’t connect with people. I connect with people really well, it turns out -- with neurodiverse people. Sitting in a room with other disabled people is a really great experience. It is happiness.

Lindsey: You need to find your community. If you can’t find someone who lives next to you, then go online. That doesn’t mean you have to like everybody, or listen to all of them, or that you’ll agree with everything everyone says -- but it’s out there. Keep searching. Because community is the most powerful thing you’ll find. It is more powerful than any education or anything else that will happen with your child. Community is key: for them and for you.

Shannon: To follow up on Lindsey’s emphasis on community: there are some really great spaces online, like the Thinking Person’s Guide to Autism Facebook Page, which has autistic people, parents, and professionals. It’s an information sharing community where you can meet people very much like yourselves. It's at: www.facebook.com/thinkingpersonsguidetoautism.

Also: something we come across a lot at Thinking Person’s Guide to Autism is parents telling autistic people like Brent and Lindsey that their personal experience as someone who can speak, and describe what they’re feeling, is different from their own child who can’t communicate the same way. But I am telling you that what Lindsey and Brent are describing is probably what your child is like, even if they’re not able to communicate that in a way that makes sense to you.

My own autistic son is a teenager, and our life together hase become so, so much happier and easier due to learning from autistic people what being autistic is like. Because if my son is not happy, then I am not happy -- and I’m sure that’s an experience shared by many people in this room. So understanding what Brent and Lindsey have been saying, about what it’s like to be autistic and what makes my son happy; the things that our other speaker Dr. Clarissa Kripke said about what it’s like to have serious medical conditions that are not identified, what it’s like to have sensory sensitivities in an sensory-unfriendly world when you can’t filter it on your own, all that.

So I’d urge caution in insisting that autistic people who can express their thoughts and feelings in a more typical fashion are not like your child -- because truly, they are like your child, but they have different abilities.

Lindsey and Brent can’t speak for your child because they are individuals. Trust me, there is as much personality difference in the autistic community as there is in any other community: Some people are great, some people are friendly and helpful, and happy to answer your questions, and … some people are not, and might tell you that you’re a jerk just by virtue of being a parent. So you need to seek out people and communities and spaces that will support you, and it is completely fine to reject a space in which you do not feel supported.

The shame that Brent and Lindsey talked about, you should not let any of that permeate your approach to parenting your children. You should try to find people who are trying to understand you, your needs, and who embody what Lindsey said about having compassion. We are looking at providing the best quality of life possible for the people we care about, the people that we work for, and ourselves. We have rights, and we should be able to exist in this world as ourselves without being ashamed of who we are.

Post-Talk Q&A

Parent Q: How do we support our children when they are having a public meltdown?

Autistic Q: How can we deal in the moment, like if we are having a meltdown in a medical office, and the response is to threaten to call security?

Lindsey: When we are having a hard time, it’s not our job to educate other people in that moment when we have so many other things going on. Maybe after the fact, you can come up with strategies for next time — or if it’s your child, talk to them about strategies they can use next time like a gesture for “please go away,” or “I don’t need help.” But interference in that moment is the last thing that you want because an autistic person is usually in the middle of processing what’s going on. Nothing’s probably going to stop it, and nothing’s going to make it pretty.

Brent: If I’m in charge of a situation in which other people might be unsafe, I am very strict about chasing those people off, to ensure my person’s privacy. I don’t care if it’s in the middle of Costco or a drugstore. That person deserves to have their privacy respected.

Lindsey: It’s not your job to educate people! Parent responsibilities are to yourself and to your child — not to other people in that moment.

Shannon: My son has recently learned to say “Stop, please.” And he uses it appropriately. It took a while for him to learn it, a lot of repetition, because he wasn’t ready before then. So just because teaching certain self-advocacy skills might not sink in immediately, that doesn’t mean they won’t sink in eventually. And even if they don’t use the skills, they do get internalized, and your kids will know you’re trying to help them, that you have their back.

Audience Q: What are some coping skills you recommend?

Lindsey. My coping strategies evolve every day. I use
  • Meditation
  • Having a quiet space.
  • Working out every day, weighted resistance helps connect my brain to my body, and process -- in general, and so I can be aware of and process energy from interactions
  • Being aware of triggers, and topics/encounters that will be energy sinks. I can’t avoid the outside world.
  • Allowing myself to listen to me! I am the expert of my body. No one is going to write the handbook for me but me
Brent and Lindsey: We also have service support dogs. Lindsey’s has been trained to provide compression as needed.

Audience Q: What causes meltdowns?

Lindsey: Sometimes meltdowns and self-injurious behaviors (SIBs) are not the terrible things they seem to be. Sometimes people just need to cry and be super upset, and that’s a way of processing. I actually usually feel better afterward. That should be OK. I don’t need to analyze why I’m doing it.

Brent: I experienced cortisol as electric currents under my skin, and needing to release it. This could  lead to serious SIBs, and it looked horrible and painful, but it was actually therapeutic.

Dr. Kripke: Data shows that mindfulness-based stress reduction techniques work for both autistic people and people with intellectual disability. Flight-or-fight meltdowns are often based on that cortisol hormone surge. People can learn techniques so that when you get that surge, and it’s not reinforced, meltdown can only last 10 - 90 seconds, instead of three hours. The goal is not to prevent the surge, but learn techniques for not reinforcing and perpetuating the surges: to focus on de-escalation, rather than escalation.

Audience Q: I wanted to ask about non-physical self-injury -- specifically for girls and women, as we’re socialized to be seen and not heard, to not make waves, to not disrupt. When we are doing things that are considered wrong -- or don’t feel right -- for me, I was so afraid for anyone to see that I was self-injurious that it all went internal. So I think that a lot of girls and women -- but also men -- injure themselves internally, and I wanted to ask if that’s part of self-injury. Because all of my meltdowns tended to come from internal stuff, not external stuff.

Brent: We talked a lot about shaming and the result terrible results of shaming, when it happens over and over again. It builds up in your head. It feels like everything you do is “wrong,” It leaves deep psychic scars. I don’t know any autistic adults who don’t feel that way.

Lindsey: I never knew that I was autistic, because I’m a woman and I’m expected to have certain characteristics I was always very aware of the way other people were acting and if “that’s not the way girls act” -- I internalized all of that. If I wasn’t acting out (having a physical meltdown), something I would never let anyone besides my family see because I was so incredibly self-conscious, then I would absolutely go internal with it. I’m still dealing with that and realizing and un-learning all of the self-harm that I would internalize from living in a world that doesn’t like the way I am naturally.

Friday, November 11, 2016

Supposed "High Functioning" Autism, and Maladaptive Behaviors

Kaelynn Partlow
Facebook.com/AutisticAngle

I'm an adult with supposed "high functioning" autism. I drive my own car, and for the most part, I have many self help skills. There is nothing obviously different about the way I speak. I also work as a therapist, with young autistic children.

Due to the nature of my job, I am required to get a tuberculuosis (TB) test every year. The test involves a needle, and I've had a severe phobia of needles for as long as I can remember. To be perfectly honest, I've always had a general phobia when it comes to medical procedures, even the painless ones. So, when it came time for my yearly test, my supervisor accompanied me to provide extra support. She and I have been close for several years and she has been there to support me in many other ways, even before my employment.

In the waiting room for my test, she tried to distract me with pleasant conversation. I was starting to feel scared, so I only gave short answers and never returned any questions. When they called my name, I slowly walked into the room, feeling even more scared than before. I began to sweat and felt tears coming, despite the fact that the needle hadn't even been presented yet. Eventually, I was instructed to sit in a chair to get the injection.

At this point, I realized I wasn't going to get out of the test, and that I actually had to do it. I began hitting myself and yelling, to further delay the process. I plopped down into the chair, only to intentionally fall out of it a few seconds later. I landed on my knees and began to cry. I hit my supervisor and then began pulling on her arms. I felt like I couldn't speak or even breathe. Like I was literally drowning in my own fear. I was a hyperventilating, crying mess on the floor.

My supervisor took my hands, encouraging me to breathe slowly and use words to communicate. I was eventually able to sit back in the chair, and was even able to express that I didn't think I would be able to keep my arms still. I asked the nurse to hold my entire arm while she did the test and my supervisor to hold my other hand. It was over in less than five seconds, and somewhere in my head, I had known that'd be the case.

So if I'm so "high functioning," why do I still engage in these harmful behaviors?

An individual with autism, like me, may have mastered many coping skills and emotional regulation techniques, however, when highly escalated, these skills can be difficult for us to access.

It's like being on the 100th floor of a building with only stairs and needing to sign an important document. The problem is, all the pens are on the first floor. You know you need a pen, and you know how to use one, but when you're up at the top, it's difficult for you the access the pen and therefore, the skill of using it.

Autistic Ability to Access Skills
[image: a simplified illustration of a four-story building.
First floor: light green windows, next to light green text
reading, "Able to regulate emotions."
Second floor: dark green windows, next to dark green
text reading, "Able to use coping mechanisms."
Third floor: yellow windows, next to yellow text
reading, "Becoming emotional, unable to
regulate emotions."
Fourth floor: Red windows, next to read text reading,
"Highly escalated, engaging in maladaptive behaviors
due to being unable to use previously
learned coping mechanisms."]
Sometimes, when an autistic individual becomes highly escalated, we may engage in maladaptive behaviors such as, self injury, aggression, or elopement. Even though we may have verbal or other communication abilities, we may have a hard time accessing them due to being so highly escalated.

Rather than hitting myself or my supervisor, I could've asked the nurse to give me a minute, in order to delay it so I could take a few deep breaths. Instead of falling on the floor, I could've stayed in my chair. However, I was in such an escalated emotional state that I couldn't access those skills at that moment.

Autism doesn't go away when a person turns 18, autistic individuals will need ongoing support in some way, at certain points. And "high functioning" doesn't mean a person doesn't need support. Autism affects everyone differently, and it's OK to need extra help with certain things.

I'm very fortunate to have an understanding employer and a supervisor who cares so much about me. I hope that someday, autism services that include highly trained and understanding individuals are available to all who need them.

Friday, November 4, 2016

How I Deal With Arguments In Support of Institutional Care

Ivanova Smith
@lauralovesian1

My name is Ivanova Smith and I am a proud autistic activist advocate. I advocate at the Washington State legislature! I testify at bill hearings about policies that affect me as a developmentally disabled person. One of the bills I put the most attention to is to shut down state institutions.

[Image: Ivanova Smith testifying against
a Bill that allow respite to be provided
at an institution! They have brown hair.
They are wearing black suit with grey
shirt and tie. They are speaking into
a microphone.]
There are four state-run institutions in Washington, and they hold 800 people with Intellectual/developmental disabilities (I/DD). These used to be called training schools. I have heard the arguments for support of these institutions many times while I have waited to give testimony. I have had to listen to all these arguments on why it OK to imprison people like me. These arguments are made by parents, union workers, and guardians. I have not seen one person with a disability advocate in support of the institutions.

I want to debunk these arguments for keeping the institutions open. It never valid to imprison a person for being disabled!

Argument 1: There is not enough funding for everyone to live in the community.

This is sadly a barrier we need to figure out. Residential support providers are shorthanded of staff because they don’t get enough wages to live on, let alone support their families and bring food to the table.

Self-Advocates in Leadership (SAIL, www.sailcoalition.org) is a legislative advocacy org that I belong to, we definitely see this as an issue. We advocate for providers to get increased wages so they don’t have live in poverty. But this argument should not be used to justify the imprisonment of people who have a disability.

My mother, who worked at a community-based residential program, has had to deal with this crisis. Lots of times when I was growing up, she got called into work when other providers could not make their shift because they did not have enough money to fix their only means of transportation. Lots of people come in and out of community-based support work. This turnover rate is very high and causes lots of stress for the people that need the supports. My mother would have retrain people constantly.

We need all community-based care workers to be seen as professionals who have high value. All support staff should at least be making a living wage with benefits so that more people want to stay in this work and not leave because they can’t afford to get food on the table.

Argument 2: The union workers would lose their state jobs that have benefits and good pay. 

This is one argument the state union puts before the legislature every year. It is frustrating because community providers get paid so much less than support staff who work in an institution. Community providers should also be getting a living wage with benefits.

This is why I support state operated community supports called SOLAs (http://arcwa.org/index.php/library/state_operated_living_alternative_sola), which are state-operated so there are jobs people can go too. But I honestly think that all community support providers should getting living wages, not just those who work for the state.

Honestly this reasoning makes me think of prison guards being worried about losing their jobs because crime goes down and we don’t need as many prisons. It a good thing to not need more prisons!

Argument 3: But it is safer in the institution!

It is not safer. Families are getting lots of misinformation, because there are tons of eyewitness accounts of abusive practices still being done in our institutions. In 2013, Lakeland Village, a institution in eastern Washington, got 40,000 Community Model Services (CMS) violations for things like tying people on the toilets, and not allowing residents to just go outside. Many of the patients got bedsores from lack of movement.

There is no freedom in an institution, and it is not safer, because there is no way to escape abuse. There are too many cases of people being raped and sexually assaulted in institutional settings, and it is harder for anyone to speak out about this abuse if they are in an institutional setting.

Argument 4: The residents like being in the institution! 

[image: Child with short
brown hair wearing teal
overalls & a striped shirt.]
This one really gets at me because I actually know what is like to live in an institutional setting. This is the earliest picture I have of me, from when I was living in an institutional orphanage in Soviet-occupied Latvia. I was born there in 1988. I lived in an institutional orphanage for the first five-and-a-half years of my life. Every day was the same, and the clothes I wore were not my own. We did not have private property, we did not have choice in what we wanted to do or eat. If you spilled your food you were denied more. We did not even have toys. Every aspect of my life was control and dictated by someone else.

When I lived there I did not know my life could be any different. It was not until I was adopted by my family, and moved to the USA, that I saw the beauty that is freedom. I never wanted to go back to that institutional life.

I failed to learn my native language because of the effects of being institutionalized. My parents invited someone who knew Latvian to talk to me, and help relearn my native tongue. But I would cry when I heard my native language, because I was scared they were there to send me back to the orphanage, and this made my parents give up.

It was clear even when I just arrived in USA that I feared the institution.  When people leave the institutional setting they never want to go back because the freedom that community brings is way better and safer. If I had not been adopted, that would have been my life. When I turned six, they were going to transfer me to a mental institution that I could not have been adopted out of. I was five-and-a-half when I was adopted.

I think about that life. I think, “Would I been happy there if I did not know any different?” I know I would not have been able to learn to read, or learn to play, or learn what the world was about. Just because a person cannot express how they dislike institutional settings does not mean they do like them.

We all have a desire for freedom. That is why prison is seen as form of punishment. Nobody really wants their freedoms stripped away. Since people with I/DD are humans too, that is why we would not want to live in segregated and isolated institutional settings. That is imprisonment, and nobody wants to be imprisoned.

When I give my testimony and look at the legislators, I want them to know I am a human being and the people being imprisoned in these institutions are human beings! Nobody belongs in a institution for being disabled. The backlash I get hurts. People trying to tell me that I don’t know what I am talking about because I am verbal and got to live a meaningful live.

But I have gotten this far because I did not stay in that institution. I have gotten this far because there were people in my life that believed in inclusion. I want that for all intellectually and developmentally disabled people! I want that for all autistic people! We should never be imprisoned for having a disability!