Thursday, January 31, 2019

Elizabeth Torres on Autistic Neuromotor Differences: The TPGA Interview

Running for the Waves
Photo © Shannon Des Roches Rosa
[image: two white kids in bathing suits
running on a beach towards some waves.]
Elizabeth Torres is Director and Principal Investigator at the New Jersey Autism Center of Excellence, and a researcher at Rutgers University, where her lab "develops new methods for precision medicine and mobile health." We spoke with Dr. Torres about her work on autism's motor and movement underpinnings, and why research in this area could lead to autistic people getting greatly improved and highly person-specific accommodations and supports, and why autism research is so rarely truly evidence-based.

Why is understanding neuromotor-based factors in autism so important?

Elizabeth Torres: As you know, autism is currently defined by observation. Think about a continuum from zero to ten, where at zero you have opinion, and at ten you have hardcore rigorous science, mathematically based. And somewhere in between, you have pseudoscience and soft science and so on.

The opinion-based evaluations are what we have right now in autism, all these inventories that basically give the child a label. And it’s label based on a deficit model: “He cannot do this, he cannot do that, he’s a failure at this.” And it’s confirming that there’s no one single, “OK, what has biology done for this child already? How is his coping nervous system actually coming up, spontaneously, with coping methods that from day to day allow him to function and to even survive? Because some of these issues are really serious when we go and measure them.

Neuromotor development starts rather early—from conception. And if this development gets interrupted, it’s a problem because it’s the stuff that scaffolds everything else: before there’s cognition, before there’s even a neocortex mature enough to distinguish a blur, or a noise signal. Neuromotor control is the basis of having autonomy, of having volition, of doing what you want to do. The beauty of it is that it’s measurable, is that it’s quantifiable.

We can go into the nervous system and harness all sorts of biorhythms, with instrumentation that is non-invasive. We can then understand the capabilities that nervous system already has. So you come to my lab and you’re already five or six years old and you’ve been having an issue with neurodevelopment since birth, and maybe nobody’s caught up with that. We can measure the child and have a comprehensive profile of the nervous system of that child and better understand what the underpinnings are of what is going on.

And we can tell you his nervous system already has these strengths and has these weaknesses.  And we’re going to work with the strengths first because this is our entry point. This is what enables us to interface with the nervous system of that child and then we can go from there and discover communication channels with that nervous system.

You have to do that from the bottom up, even before thinking of any kind of language, any kind of community, social, anything. It’s the basic thing. It’s quantifiable; it allows you to see what the naked eye cannot see. It’s like putting on a pair of glasses. It’s like when they discovered the microscope and then suddenly they said, “oh my God, there are all these organisms living in this microworld!”
That’s what it is. It’s so fundamental, and it will allow us to actually do science. Because in that continuum I told you at the beginning of the conversation from opinion to serious science, we’re in the opinion phase of things. It’s really, really bad. And you have all kind of people telling you, “this is scientifically proven.” No, it’s not. You haven’t even measured anything.

TPGA: So getting into what you were talking about, things on the microscale, that leads into my next question which is what exactly are micromovements and how can they affect autistic functioning?

Torres: Micromovements are a data type that we invented to study the fluctuations in the biorhythms of the nervous system. So whether you take an electroencephalogram or electrocardiogram or electromyogram—that’s to measure muscle activity—or kinematics, as in the type of stuff you see in CGI movies like Avatar, that’s all done with motion capture. We can measure all that stuff.

It’s all non-invasive, and the way is through wearables. The wearables we have are like smart watches, like the Apple Watch. Those give you data from the nervous system. They give you temperature, heart rate, motion, respiration rhythms.

You can think of those rhythms like a time series. If you were to have a probe on a person from when they were an embryo to when they died, you would have an infinite wave form of fluctuations. Peaks and valleys that go up and down. With micromovements we measure the amount of fluctuation, the amplitude, how much noise you have in your signal.

Think about it as the little bars on your cell phone: when you have reception you have a lot of bars, when you have no reception you have little or nothing. The micromovements we’re measuring are like that. It’s not that these are bad or good in the case of autism. We all have micromovements. When I measure it with regular kids with no neurodevelopmental problem, it has a signature. And when I measure it in a child with autism it has another signature.

The idea is that since we can measure it and we can track it over time, we can bring the signature of this person with this label called autism and shift it to the kid that doesn’t have an issue, that doesn’t have a problem with the nervous system. By measuring it, we can understand how it changes. So we can then track how it changes and we can steer it towards the direction that changes in the appropriate way—appropriate meaning that the child is comfortable with it. It doesn’t cause stress. It doesn’t induce anxiety in the kid.

We can measure these things. When you have stress, I know the signature of your heartbeat, of your skin, how much you sweat, etc. These are all markers that are biologically grounded. The nervous system is a physiological system. It has a certain structure and a certain neurophysiology—a certain function that we understand in neuroscience. We don’t have to make it up, we just have to measure it and track it.

This waveform that is generated enables you to measure anybody: whether you are three years old or sixty-six years old. Whether you are verbal or nonverbal. Whether you are typically developing or whether you have a problem. It’s a general thing. It’s not that it’s good or bad, it’s just that with autism we can measure the waveforms and we can track them and see how the child is growing and how his biorhythms are changing.

Because we know how they change we can promote change in a good direction and we can avoid the things that make it change in a bad direction. So if he’s taking a medication that is actually having a negative impact in the child we can measure that and say no, you can not take this because it is making you worse. This is the type of stuff that the naked eye cannot see.

A clinician looking at the child is not never going to know this, this is stuff you have to measure with instrumentation that measures at a very, very high sampling resolution and at a very high frequency so that you can then see the stuff that the naked eye cannot see.

TPGA: When you say whether things are good or bad for a person, are you talking about going from a place of stress to a place of non-stress? Or what does that mean?

Torres: It means that your biorhythms get out of whack if something is wrong. Imagine that you’ve taken medication that makes you shaky. It fixes you on one hand because perhaps now you have better concentration or can pay better attention, but on the other hand you develop a tremor and can no longer control your fingers. So, say, if you like knitting you can no longer knit. Before you get so bad that you can no longer knit a sweater like you used to, we can tell you, “hey, this is not good. It’s not visible—you can’t see it—but we can through these measures, so I’d rather recommend that you not take this medication.”

So that can prevent taking high risks because a lot of our kids are on meds—for example psychotropic meds—and we have no idea what the effect is. Pharmaceutical companies don’t even have a section of pediatrics. Drugs that were developed for an adult nervous system which is already mature and already in a steady state  are being used for kids with a nascent nervous system that is growing, developing, very fragile. So it’s an insult to the nervous system without knowing the consequences. We need to measure things. That’s essentially what we’re doing.

TPGA: My concern in this would be how people are interpreting the signals. I worry that people are looking for normalizing of autistic kids, instead of understanding what it means for them to be happy as an autistic person, or cope as an autistic person. Do you think that these signals could be used to try to generate evidence for making children do things because people want them to be less autistic?

Torres: Yes, absolutely. One of the things that the neuromotor signal tells you is how much volition that child has. Volition means I don’t have to tell you to do something. Your nervous system continuously knows, has autonomy, and knows how to control the movements of your body. It means I don’t have to sit there and give you a piece of candy so that you will point at a dog. That is the stupidest thing that you could do for a child. That’s not how a babies learn! Babies learn from the bottom up. You don’t tell babies to point at a dog. You don’t tell babies, “touch red 400 times and I’ll give you milk.” You don’t do that.

Babies self discover what they need to do, what the goal is. They self-discover it spontaneously. They start through trial and error. They do a lot of arm flailing. They drop a lot of things on the floor and they cause a lot of noise. All of this is exploratory phase of the nervous system. All it is is the baby finding its own way.

I have yet to see a newborn that you say okay here, suck on the nipple of your mom this way and I’ll give you a sweet. It just doesn’t make sense. the whole thing is backwards. When you have a therapy that does that to a child, be very worried about it because that’s not the way a nervous system learns naturally. You can help your child. You can guide your child. But you cannot impose something on your child. It cannot be 100% instructions: “do this, do that.” You have to let a child explore and discover and be curious. It’s the most fundamental property of a human being.

Children on the spectrum are no different. They’re very curious. If you let them, they’ll show you what they want. We’ve done it with totally nonverbal children that cannot communicate to us through language but can communicate through other means. You have to trust the child and the problem is that a lot of these other things that are out there have an agenda. It’s an expectation: “it has to be this way and cannot be this other way. I’m going to discourage anything that looks odd and does not conform to this agenda.” In doing so, they are actually—extinguishing is the word they use—the very solutions that biology found for that child. That solution may look odd to you but it’s actually a pretty good one biology came up with and you should work with it. You should not discourage it. You should work with it and learn it and learn how to use it to help. Because for some reason that nervous system found that mechanism to help itself so that’s what we should do: we should be looking for these kinds of clues.

Floortime for example, at an early stage allows that path of exploration because it’s a natural developmental thing. It’s built with a developmental approach in mind, not with a rat conditioning approach in mind. You cannot condition a human being like you condition an animal. That’s the bottom line. You need to let the system explore. We have a whole field of developmental psychology. Why can’t we look at that information, at that body of knowledge to help us?

It’s the same with occupational therapy. That brings me to your question about therapy. There are many therapies out there that need to be supported by insurance companies. They’re not right now, so the parents are on their own. They have to pay out of pocket and there is no codification of therapies. It’s very bad for parents.

TPGA: We tend to be wary of approaches like ABA therapy. We’ve published accounts from autistic people themselves who were in ABA therapy, and who had really negative things to say about it because of some of those factors that you just mentioned.

One thing I wanted to ask you about: you emphasize that sensory input is not passive. What do you mean by this, in a way that can help parents and autistic people better understand themselves?

Torres: It means that everything that comes into the nervous system, from sound to lights to touch,  are passively integrated with your movements, with your behavior—which is motion. It’s dynamically changing. That means you also have a nervous system that is reacting to sensory input. You don’t have a passive nervous system; it’s reacting to the input it gets. So you have to measure the reaction.

Essentially the micromovements measure that reaction and tell you how the nervous system is reacting to everything that is coming, from noise in the environment to people moving around you. It’s noise. People moving around you in a crowd, that motion is very overwhelming for a child with autism because you can’t decode it easily. There are a variety of reasons underlying the body sensation that you still have to build, or excess sensation or lower sensation than you should have.

That’s a problem when the sensorymotor system is not functioning in the same way as in a neurotypical system. How that nervous system ends up coping with the interpretation of the world around it and with the perceptions of the world around is complicated. You are constantly bombarding that nervous system with sensory inputs of all kinds. That nervous system is reacting to it, and we need to understand how it reacts to it.

When I say nervous systems, notice that I put an “s” at the end  because we have: the enteric nervous system, which is the intestinal, the gut, it’s a whole system on its own with its own brain, we call it the second brain. We have the autonomic nervous system with the heart and the respiration rhythms and all that. We have the peripheral nervous system with all the nerves that enervate the body and the face and eyes and enables the child to taste, to smell, to look, to control the muscles of the eyes. We have the brain and the spinal cord which is the central nervous system and within that we have a whole world of inputs.

All of the input a child gets, from food, from sunlight, from sound, from touch, from pressure—all of it counts. But the problem is that we don’t know how it counts. We don’t know how the nervous system of that child is reacting. The nervous system of that child we have in front of us is going to react very differently from the nervous system of a child next to it. It has to be a very personalized, very individualized approach. That’s the only way it’s going to work. Any kind of treatment must start with a comprehensive profile of the nervous systems of the child. All of it. As much as you can get to non-invasively.

Sometimes it’s difficult because a lot of our kids have gastrointestinal issues, for example, and it’s difficult to get to that non-invasively. We don’t have a probe that tells us, “he’s in pain.” His belly aches and the poor thing cannot move very well because you can’t think when your belly aches. It’s as simple as that. And so you have all kinds of people interpreting this as this or that. But, no,  he has an issue with his gut. And the gut has a lot of neurotransmitters that have to be well balanced with the brain’s neurotransmitters for things to work well in a balanced way. Things like this are so important and we just don’t know, so you have all kinds of people making it up as they go and selling snake oil. It’s really terrible.

TPGA: We do a lot of work—and that’s actually why our site was founded originally—to counter pseudoscience. Our mission has expanded to incorporate the neurodiversity perspective, but debunking autism quackery was our founding mission because there was so much bad information, and people were being tricked into spending money on things that wouldn’t help their kids.

Torres: That wouldn’t help and nobody knows that it wouldn’t help, because nobody’s ever done any science on it. Nobody’s ever characterised it. That’s a problem because a lot of things that are called science are not.

TPGA: I can tell you that when my son was initially being diagnosed, I took him to one of the DAN doctors because I didn’t know any better. It was in 2003 and he sent me back a five page panel that showed all these things my son was allergic to and all these different IgA/IgB reactions and it looked like science. But it didn’t mean anything. None of it meant anything.

Torres: IT’s terrible. I hear you. It’s detective work, and some people don’t have the skill to do it. Some people do know how to get through the loopholes of the system and how to get every single benefit out there that they’re entitled to, but not everybody has that ability. So because of this one size fits all model, the children are the ones hurt because it shouldn’t be one size fits all when each child is so different.

TPGA: You talked a little bit about why the approach to diagnosing autism lacks proper scientific rigor but I wanted to ask: you specifically talked about why the ADOS [Autism Diagnostic Observation Schedule] is not a great standard autism diagnostic tool. Could you elaborate on that?

Torres: The problem is it’s complicated because it’s a little bit technical so it’s kind of hidden in the fine print. Let me try to explain it as best I can. It’s actually a mathematical issue.

The ADOS was a test that was designed to detect how a child was not socially appropriate and had not reached certain milestones of social adequacy. Right here you have a problem because “social” is a very culturally-dependent thing. How do you define social appropriateness? Right there, that’s a huge issue.

But then you get into the details and how do you score this system? So think of when you go to the doctor and they ask you, “on a scale from 1 to 10, what is your pain level?” You say, “well, it’s a 6.” So he writes down 6. Then the next person comes through the door and he asks the same question, “on a scale from 1 to 10, what’s your pain?” And this person says it’s an 8. What does that mean? What does that 6 mean when you’re just one person with one nervous system and they’re another person with a different nervous system? You came up with a scale and it’s a completely arbitrary.
So what does it mean to not have pain for example? Well, nobody ever measured that. What does it mean to not have autism? You would think that the test that is the gold standard to diagnose autism would be tested on neurotypicals. How does a neurotypical child react to this test? What are the baseline scores that you get and how do you normalize those scores?

“Normalize” is a mathematical term that means you put it on a scale like a standard, say 0 to 1. Everybody’s on that scale and it accounts for anatomical differences, age differences, physical differences, cultural differences and things like that. Because if you have a kid from a poor district who goes to a school that is not properly delivering knowledge and you have another kid in a rich district who goes to a school with all kinds of privileges and you put the two kids together and give them the exact same test. Guess what? Chances are the kid from the poor district is not going to do that well because the test was not designed to account for those differences in the district schools. It has nothing to do with the kid. The kid is just as bright and if he were given the chance to go to the rich kid’s school he would do quite well.

So that’s what we’re faced with here. You have a test that has no standardized scale. It’s never been done on neurotypicals so we don’t know what baseline means. A scale of 3 or 4 or 6 or whatever means nothing. It has no physical value that I can anchor it to.

When you have a temperature of 40 degrees celsius you have a fever, right? And you know that it confirms that, most likely, you have an infection. You know that because millions of people since the thermometer was invented have been measured and you know that when you’re at 36 or 37 celsius you don’t have a fever. But at 41, look out because you might get a seizure if your child has a fever. You know that. But you know that because with a thermometer somebody figured out that 37 is normal, you don’t have to worry about it. But we don’t know what "normal" is with the ADOS. Nobody ever measured it. Can you believe this? That’s so wrong, don’t even get me started.

As a researcher in science, doing rigorous mathematical oriented science, I have to use this thing that has no meaning whatsoever. And I’m forced to use it because the system is rigged. Somebody is making a huge profit with this and everybody’s imposed this test and that’s a problem. There’s nothing we can do about it. It’s really really bad.

TPGA: I see a lot of things that you’ve mentioned. The district that I live in is really diverse, both racially and socio-economically. I’ve been involved with the Special Education PTA for the school district and see similar inappropriate situations in IEPs all the time. The standardized testing is not measuring kids appropriately, or doesn’t include factors like language translation, or the inability to get to meetings because you have to work. And so we have kids have the same disabilities and same support needs but get completely different services. It’s a real problem.

Torres: It’s a problem, and another problem with the ADOS test is it doesn’t tell you what the child’s already good at. It doesn’t pin down, “okay, he’s capable of doing X.” It just tells you all the bad. Frankly, if I were a parent, I’d already know what he cannot do because I live with the child. Tell me what the potential is. What’s the potential and I can work with that and we can work together and grow this child and make them into a happy human being. They don’t have to conform to your standards because your standards -- who told you that those were the standards to begin with? Who decided this?

TPGA: We push back really hard against the deficit model so it’s really great to have you as a researcher to back that up.

Torres: A lot of researchers are not aware of half the problems that we have in autism. We did go to the street and interview hundreds of people: from parents to survivor kids to lawyers to school district people to counselors, ABA people, BCBAs, everybody. So we got a pretty good sense of what’s going on. We don’t know everything of course, but we’re very in tune with the parents, with the families that come to our lab. We feel their pain. We know what they’re going through. We understand, and we try to help because the thing that I see is that you have a lot of people who are offering stuff that is not true. They’re just taking parents for a ride: offering snake oil therapies. Don’t go there. Nobody knows anything about that. As a parent, you’re desperate. You want the best thing for your child so you do whatever—we all do.

I mean, I went through the same thing. When my parents were alive and I had to deal with that system, which is completely different, with other headaches. I had to learn how to navigate the system for the elderly. And you’re desperate. You want to do what’s best for them and then you realize, “oh, these are all the bad things.” You have to be very alert to not fall into these traps.

TPGA: That’s the thing and why we try to be an evidence-based resource. We know that most people, like you were with your parents, are coming from outside a complicated system. And a lot of the parents in our community are autistic, but they don’t know that. So they’re coming from outside the disability and autism system and having to learning everything. But there’s so much information. It’s hard to navigate through it, and hard to figure out who to trust.

Torres: There’s no road map. That’s one of the things which anyone with resources for research or whatever should have devoted resources to: a road map for the parents, tailored to their region. Here in New Jersey, for example, I’m sure the state is quite good at helping parents of children with a disability, but it’s not good at telling them how they can get help. So the state can help you finance a van equipped with mobility equipment, but parents don’t know that for a fact. They don’t know how to get it, how to get the financing, how to get help, what they can put in it.

Or you have a child with autism, or whatever you want to call it, that has issues with being inside the house so they need to get out of the house and they will go running into traffic. The state here has a plan where they help you fence in your house. They help you to finance that stuff. Little things like that. A sign in the neighborhood saying, “beware a child with whatever.” But parents don’t know this because there’s no road map to tell you this is what you’re entitled to, this is what already exists.

And it’s different from state to state, so it’s hard to even find simple things like telling a teenager how to take public transportation to go from point A to point B to have a job. They can’t work because they can’t navigate, they can’t drive. Most research we do involves children but as they grow and they go into teenagehood, the parents say, “what am I going to do when the yellow bus stops coming?” Because after that there is virtually nothing for the adults and very little science. We just don’t know.

It doesn’t necessarily get better for everybody so some of these issues are converting to other disorders, like depression. Plus all the medications people have been exposed to might do something to your nervous system already, which we don’t know, because … we just don’t know.

So there’s very little that science can do right now because most science occurs in what we call the ivory tower and people are sheltered from this. They have not gotten in touch with the reality of autism. If you’re going to go into research it should be compulsory that you go and see it as opposed to doing research in this esoteric way where you have no idea what the reality is.

The research is not going to solve any real problem then, such as practical day to day issues.

TPGA: I hear you. I regularly attend INSAR. I don’t know if you ever go?

Torres: I went twice and then I stopped.

TPGA: It’s improved a lot, actually. 

Torres: I’m glad to hear it but the last one I went was in Toronto [in 2012]. I said, “I’m going to wait a few years because I know things get better.” So in a few years I’ll go back.

TPGA: Toronto was not great. I was sitting in the back of the room with a bunch of autistic and non-autistic friends and—I don’t know if you went to the keynote on autism and friendship—they were talking about how autistic people couldn’t make friends, while we were sitting there in a big group of neurodiverse friends.

Torres: That was the level of discourse. I just said, “what? I’m leaving.”  There were too many general statements. “Autistic people don’t have empathy, they don’t have theory of mind.” I was just, “what?”

TPGA: We now host the AutINSAR Twitter chat between autistic people themselves, a bunch of autistic self advocacy organizations and a bunch of researchers—and some of the latter are also autistic. It is a really great conversation about autistic priorities and directions for autism research. There was a lot more that had to do with acceptance and lifespan issues. They’ve been focusing on that a lot more since the 2014 INSAR conference. So it’s definitely getting better, but there is still a lot of stuff that was really questionable, like epigenetics. I’m not saying that epigenetics isn’t legitimate in general, but the way in which it’s being harnessed for autism purposes is really...

Torres: Oh, yes, I’m aware of that.

I did see the program this year, and I said there are only so many conferences we go to per year because there’s a budget for that and I have to be selective. I have about nine people that I have to take with me, who do research, so it gets very expensive for hotel and airfare and everything and  they all want to go and present their research. So I’m selective.

One conference I go to every year is the Society for Neuroscience. It’s a very serious conference. It’s quite large and a little bit overwhelming because they have over thirty-five to thirty-six thousand people worldwide doing brain research in general. But it has sections on autism and they’re quite good so I go to that one.

It’s more scientific, more serious. None of these kinds of opinions like “people with autism cannot make friends.” I’m like, “where do you get this? You cane out of the shower and you thought of it so now you design a survey to do it or some silly thing like that.” We joke about it in the lab, because what can you do? But it’s serious stuff. It affects people’s lives. Those kinds of things that are totally not science, they drive legislation. It’s dangerous.

TPGA: This is a really helpful and informative conversation. I’m really grateful to you for it. Is there anything else that we didn’t cover that you wanted to talk about?

Torres: No, this is a good start and I think it’s on a level of discourse that we all understand. I’m aware that our research is quite technical, and we have a long way to go to communicate it to the public.

We’ve done so much that we haven’t even published that I think is going to be quite promising, but we want to make sure before we talk about it that it works well and it’s steady and robust. We’re trying to allocate some funds to make animations and videos and a web site where we can communicate the science in a user-friendly way. I know that what we’re doing is going to work, and it’s working already, and it’s going to help people because it’s not built in a spirit of “them and us.”

TPGA: That’s what we need more of: a lot less “them” and a lot more “us.” I absolutely agree.

Torres: That’s the spirit of my lab. We’re working toward making it more accessible to people in general to bring awareness of the things that are assumed—and they’re all assumptions. It’s an effort between my lab and the parents and the kids and the survivor kids and so on.

TPGA: Great! Well, thank you. This was really, really illuminating and I think will be very helpful for a lot of our readers, so thank you very much.

Transcription by Max Sparrow (thank you Max!)

Sunday, January 27, 2019

I'm The Parent of a "Severe" Autistic Teen. I Oppose the National Council on Severe Autism.

Shannon Des Roches Rosa
squidalicious.com

Leo making me make fart noises, because that is never not funny to him.
[image: Photo of the author's teen son squeezing her cheeks so she will make
a raspberry sound with her mouth. Both are wearing hats, outdoors.]
Last week my son Leo and I had a pleasant arm-in-arm walk around a fancy shopping center while his sibling was at an appointment. We strolled past the coin collector’s shop and the jodhpurs boutique, then popped into the housewares store—just in case they had any unintentionally awesome fidget toys (which, being gadget central, of course they did).

Finding delight in utilitarian objects is part of what being autistic means for my son. Another part is being a traveling one-person party. I go with his flow, as long as he's not being disruptive. So as we wound our way past the store's racks of remarkably specialized cooking items, and just as I was getting worried about the audibility of Leo's new-fidget-propelled joy, one of the cashiers called out, "Hey guys, how are you doing?"

His tone that made it clear to us as well as to any shoppers in earshot that he was glad we were there, and also that he was on deck if we needed him. I exhaled. When we checked out, he addressed Leo cheerfully and directly but did not demand a response, and in general made us feel respected, comfortable, and welcome.

That cashier's attitude? It is what I want most from society, for Leo: Other people accepting my son on his terms, and letting him know he's considered part of the community. I wish such attitudes were more common, so that I could feel less anxious about Leo's safety and well-being as he moves through the world now, and also in his future without me and his father by his side.

But this accepting attitude is not reality for most autistic people, whether or not they share Leo's intensive needs. Leo and his autistic community members tend to encounter disinterest, misunderstanding, or outright hostility from society—sometimes even within their own families. This negativity takes root because mainstream messages and resources about autism tend to center on autistic people as strange and pitiful and burdensome and in need of fixing or curing, rather than on understanding autistic experiences and communication.

Unfortunately, most people and parents don't know how to find their way past this bad autism information. The result is too many autistic kids spending their lives misunderstood and mistreated, and as a result acting out in frustration. Their behavior is then perceived as non-compliance, and the kids get punished for "misbehaving." And then the parents publicly complain about the kids, focusing on how awful autism is for the parents rather than on the tragedy of autistic kids' needs being overlooked. It's an avoidable cycle of misery for the children and parents alike.

Still, I can't blame parents in my position for being pissed off in general, because our kids' and families' rights, supports, and services needs are rarely sufficiently addressed: We all feel disenfranchised, because we all are disenfranchised. But this sorry state of things is also why, as non-disabled parent, I look to developmental disability organizations like The Autistic Self Advocacy Network, ADAPT, and The Arc for their insider experience and knowledge about how to address that disenfranchisement. I am grateful to these organizations for how long and hard they have been fighting for rights and services for people of all ages and abilities, and in ways that we parents need to recognize, respect, and get behind.

And this is why I am so dismayed by parent-run organizations that actively oppose autistic self-advocacy leadership on autism issues. The latest example is the self-proclaimed National Council on Severe Autism (NCSA), which is not only out of step with the positions of nearly every other rights- and services-oriented developmental disability organization, but promotes a cluster of fallacies: that severe (i.e., high support) autism is being ignored; that autistic children suffer from autism rather than from having their autistic needs misunderstood or penalized, or having been subjected to traumatizing normalization therapies; that segregated housing is in autistic people's best interests and should be allotted Medicaid funds earmarked for community-based housing; that eugenics is sometimes okay and so are restraints and seclusion; that autism is an epidemic, and that autistic self-advocacy efforts are only for quirky people who aren't actually like their "severe" kids—whom they want to cure, never mind that people with intellectual and developmental disabilities helped found the disability rights movement.

To further the embarrassment for any newly-formed autism organization, NCSA contains exactly zero autistic board members—even though autistic parents with high-support autistic kids are not hard to find. In an era increasingly focused on representation and inclusion, this blatant exclusion takes a walloping amount of arrogance—and possibly a cynical awareness of society's patronizing assumption that anyone who advocates for disabled people must be a good person.

Why do these non-autistic parents feel the need to draw up their own organization? As Emily Willingham notes,
And what does NCSA even mean by "severe autism"? Well, they claim:
"Individuals in this category are often nonverbal or have a limited use of language, have intellectual impairment, and in a subset, exhibit challenging behaviors such as aggression, self-injury, and/or property destruction that interferes with safety and well-being."
But as Sara Luterman writes on Patreon (paywalled)
"Notably, whose well-being isn't mentioned. So are people with "severe autism" nonspeaking? Do they have intellectual disabilities? Maybe! But it could also be literally anybody, because it's left so open ended."
So, to the fallacies. NCSA parents claim that "severe autism" is being overlooked. This isn't true. Media coverage focuses on "severe" autism a lot, often in tell-all stories that compound stigma against high-support people like my son. A recent example is NPR's story about the impending FDA ban on electric shocking devices to control autistic behaviors. To my and others' dismay, NPR Twitter characterized the devices as a last resort for "severe" autistic people who "misbehave," instead of centering autistic survivors' and advocates' perspectives. Contrary to NCSA's claim, the real problem is not that we're ignoring high-support autistic people. The problem is that they are too often objectified and dehumanized.

NCSA also claims to "speak for those who can't speak for themselves." This is absurd, because everyone communicates; the problem is that not all parents and caregivers have been taught, or are willing to recognize, the ways in which autistic people communicate. And by making such a claim, NCSA is rejecting the reality that no one is too disabled for self-advocacy. This has not escaped the notice of autistic advocates with intellectual and developmental disabilities (IDD), like Ivanova Smith (who, remember, represent "severe autism" by NCSA's definition). In response to an NCSA board member promoting the new organization, Smith wrote:
I am as angry as Smith is about NCSA's approach to the issues like institutionalization and housing: we are in a housing availability crisis for IDD people, yet NCSA's energies are focused on getting Medicaid to pay for segregated housing, instead of the community-based options disabled people themselves want and have fought to make possible.

What NCSA wants, specifically, is to create boutique “small-i institutions” to cocoon their own kids, even though we know from self-advocate histories that even fancy institutions are still soul-sapping, and differ very little in practice from the institutional hellholes parents think they will be avoiding. Also, by trying to tap into Medicaid funds for their boutique homes, NCSA is screwing over people who have the same support needs as NCSA parents' kids, but do not have wealthy parents trying to game the system.

If they want to do the right thing on housing, NCSA should look to another relatively new parent-led org, Little Lobbyists, whose mission is “Advocating for Kids With Complex Medical Needs and Disabilities,” and who work alongside disability and self advocacy organizations on long term housing and supports. At a recent Disability Integration Act, Little Lobbyists tweeted:

There are many other examples of NCSA's approach being counter to that of most organizations championing rights for people with IDD. This includes their horrifying callousness in posting a position statement refusing to ban seclusion and restraint one month after 13-year-old autistic California student Max Benson died while restrained. NCSA also endorses putting their adult autistic offspring under legal conservatorship, while opposing the supported decision making options that IDD orgs have been behind for years. (Even the American Bar Association recently endorsed supported decision making.)

Another tactic NCSA uses is publishing harrowing, parent-perspective accounts of autistic kids and adults having meltdowns, self-injury, or aggression. I can guarantee that I've never read a single such "real autism expose"—not one—that hadn't also happened to parents, self-advocates, and professionals I know, and who chose to help their loved one or client instead of focusing on how hard the experience was for them. The difference, besides respecting another human being's privacy and dignity, is approaching an autistic person in distress from a perspective of "what is wrong" and "how can I help them?" and also from understanding how things non-autistic people don't think twice about can be really frustrating or intolerable for some autistic people, like transitions, lights, and scents. It is disheartening to see parents being encouraged to take the approach that "this is the fault of autism which is a burden on me and all I can do is support an organization that says they have answers."

In contrast to the NCSA, autistic self-advocates don't claim to be able to "fix" anyone or everything. What they do want is to ensure that everyone who needs accommodations for their brains gets those accommodation from day one. Self-advocates want these basic rights with the full understanding that some autistic people will still sometimes be self-injurious, or remain non-speaking, even with the most understanding parents and all of the accommodations possible. And even when things are hard for everyone.

Parenting is never going to be a pony party, no matter how easygoing kids are. But the baseline is that, whether our kids have intensive support needs or not, we parents need to be on our kids' sides. Plus we know, too well, what happens when the negativity and parent-burden mentality of organizations like NCSA are not countered: we will continue to see filicides of "severe" autistic and disabled people. As disabled advocate Ruti Regan notes,
Can you imagine how much more productive the NCSA parents could be, with their considerable energies, executive function skills, and resources, if they chose to to work against those negative parent narratives instead of promoting them? If they chose to work with self-advocates instead of opposing them? If they would acknowledge disability advocacy history, including the awful things that happen to people with disabilities when non-disabled people dominated disability conversations? If, instead of cherrypicking statistics to misrepresent the autistic people who have always been here as a tsunami epidemic that will overwhelm parents and families and governments, they aligned with disability advocates on policy and research, so that all autistic people, no matter their age or ability, could have a better quality of life?

Until the NCSA and their ilk wise up about what their priorities should be, their kids are the ones who will suffer. The rest of us will look to autistic self-advocates for direction, and fight for change and hope after the model of autistic self-advocate Sam Crane:
"We're a community that wants hope, and want support. So our first advocacy campaign back when we were entirely volunteer led tiny oganization in 2006, was against an awareness campaign that portrayed autism as the sort of dark force that was holding children for ransom. And that was sending messages like, you know, we have your child and your child will never have friends and is doomed to a life of social isolation and will never live independently. Those are messages that autistic people often do hear about their future, and we found that it really negatively affects us. We are people like everyone else. We want to believe that we have hope in our lives." 
And Leo and I will continue our excursions, always looking for fidgets and fun, as well as more places and people that make us hopeful about his future in our community.

Saturday, January 26, 2019

CinemAbility: A Review

CinemAbility poster via Amazon.com
[image: Movie poster featuring a shadowy
photo of a person in a wheelchair, seen from
behind. Headshot of the actors Jane Seymour,
Ben Affleck, Jamie Foxx, Marlee Matlin,
William H. Macy, and Geena Davis are
arranged in a diagonal over the wheelchair
user, above large white text reading
"CinemAbility The Art of Inclusion."]
Maxfield Sparrow
unstrangemind.com

CinemAbility: The Art of Inclusion (2018)
Directed by Jenni Gold, Leomark Studios
Closed Captions

I recently and eagerly watched the new documentary CinemAbility: The Art of Inclusion via an Amazon rental. Although I have a couple of complaints, I don’t want to lead with them because the documentary overall was amazing and has been sorely needed. For those who only read articles' opening paragraphs: you must see this film! You will not regret it.

The documentary was filled with interview clips—actors, directors, casting directors, academics. I apologize in advance because I won’t have the names of some people. While the documentary had closed captioning and Marlee Matlin had an interpreter, one accommodation typically missing from documentaries was also lacking in this one: identifying the speakers every time they come onscreen. I have prosopagnosia (face blindness), so in a film with scores of different speakers I really need their identity to be included every time they appear or I will be lost as far as who is speaking at least half the time, if not more.

The opening clips centered around an academic, Martin F. Norden, a communications professor who teaches film and media studies at the University of Massachusetts, Amherst. Norden’s 1994 book, The Cinema of Isolation: A History of Physical Disability in the Movies, appears to have strongly informed the entire documentary in form and content. Theories from his book were used to lay the groundwork, demonstrating the pre-existing stereotypes that cinema needs to work past if films and television are going to depict disability in an honest and realistic way that does not harm or diminish disabled people in the name of entertainment.

The documentary also goes through a chronological history of disability, interwoven with interviews, facts, and opinions, and that chronology began at the same time as Norden discussed the three biggest tropes or storyline stereotypes about disabled people: the Saintly Sage, the Sweet Innocent, and the Obsessive Avenger.

The Saintly Sage is usually elderly. A classic example is the old, blind hermit in Bride of Frankenstein (a character who was also spoofed in Mel Brook’s comic satire, Young Frankenstein -- not mentioned in the documentary, but I couldn’t help thinking of it, especially as I’ve never seen the original Bride of Frankenstein film). The old man can’t see that Frankenstein is a monster and treats him like a human being until the hunters come looking for him and tell the hermit that he’s been sharing dinner with a monster.

The Saintly Sage is not a compliment—it is using a disabled character as a plot device to illustrate a point or advance the script. Saintly Sage is the disability version of another trope often called the “Magical Negro.” Someone the audience views as “exotic” comes into the story solely to assist the hero with life wisdom inaccessible to “normals.” Another similar trope is the “Manic Pixie Dream Girl” who is not a fully-formed character and only exists to help the male protagonist find meaning and purpose in his own life.

The film digresses a moment to show some clips of a homeless, disabled street beggar being used to comic effect while the narrator (Jane Seymour) tells us that this clip filmed by Thomas Edison may be the first depiction of disability ever in film. The image is iconic after all these years of being repeated again and again in much the same tone Edison originally depicted.

The Sweet Innocent is usually a beautiful young woman or a child. This is the prototype for the “good disabled person” that so many of us feel near-continual pressure to be. The Sweet Innocent is kind and good, usually to the level of being completely one-dimensional. They are sexless and childlike and too good to be real. At the end of the movie the Sweet Innocent is usually rewarded for being a good disabled person by receiving a miracle cure.

Several examples of the Sweet Innocent were depicted but the one that most caught my attention was from the movie Heidi where the Sweet Innocent in the wheelchair is taught to walk by Shirley Temple’s Heidi, another character too sweet and good to be true. This is one of my earliest memories of a wheelchair user being depicted in a movie I watched as a child. That illustrates how damaging these stereotypes and tropes can be. Movies are many people’s first education about what disability is, what it means, how we should respond to disability, and so on.

The Obsessive Avenger is the flip side of the Sweet Innocent—the “bad disabled person” who gets punished instead of cured. Some examples include the Phantom of the Opera, The Wax Museum, and Speed. Although not depicted in the documentary, I realized that many of the villains in Batman are also Obsessive Avengers. The Obsessive Avenger becomes disabled and is so infuriated by it that they devote their life to seeking revenge for the wrong done to them and typically die by the end of the movie.

The bad disabled person off-screen is the one who is not always cheerful and smiling and sometimes is angry. I think a lot of Autistic activists get socially punished (or much worse!) because we are viewed as “bad disabled people” for feeling angry about some things, for speaking up for our rights instead of being grateful and happy all the time. Sometimes it feels like all a person has to do to be the “bad disabled person” is mention one thing that needs to be changed.

I really do feel like these movie tropes have trickled through our society, shaping ideas like inspiration porn and so-called mercy killings that affect Autistics and all disabled people. CinemAbility is an important film for Autistic people even though the word “autism” is never spoken in the documentary and there are only a few clips, one to two seconds long each, from movies and TV about or including Autistic people. The ones I noticed were: Rain Man (which went by so fast I didn’t even catch it until I saw it listed in the end credits!), Temple Grandin (which somehow got listed twice in the end credits), and a quick image of Max, from Parenthood. If you add in other developmental disabilities, there was Charly, I Am Sam, What’s Eating Gilbert Grape, Life Goes On, and Forrest Gump.

That’s my biggest complaint—how under-represented developmental disabilities were in the documentary. I did some thinking about why that might be and I have a few thoughts on that:

First, I think we had to be “patched in” to be there at all because, as I mentioned, the documentary seemed to have heavily relied on Martin F. Norden’s work and his book was strictly about physical disabilities. The only developmentally disabled character who got any real air time at all was Corky, played by Chris Burke, from Life Goes On, an ABC television show that aired from 1989 to 1993. I watched it when it aired and enjoyed it. Chris Burke, who is also a Down syndrome activist and singer, is a solid actor and Corky was a great character. I didn’t realize until I watched the documentary that the show was made for Chris Burke.

Burke had written to ABC, saying that he was an actor with Down syndrome and wanted a chance to be in a show. Executives and casting staff were charmed by Burke’s friendly and direct request and built Life Goes On just for him. It was ground-breaking television as far as depicting someone with a developmental disability living a happy and fulfilled life.

The documentary shows a clip of a mother of someone with Down syndrome (as I asked my screen why they were talking to a parent and not a person with Down syndrome), Gail Williamson, who said, “The more images we put in TV and film, the more opportunities there are for people to see what Down syndrome is and have a better understanding of it.” She went on to mention that the Down syndrome community had a definite before Corky / after Corky effect: doctors started telling mothers that their baby has Down syndrome but they shouldn’t despair because their child might turn out to be like Corky.

That’s where representation gets sticky, of course. The film didn’t talk about the “super crip” phenomenon at all (although it did, very briefly, mention inspiration porn.) I can’t help wondering how many people felt oppressed by the pressure to be “another Corky” just as so many of us Autistics feel pressure to be “another Temple.” Telling mothers that their child could be another Corky might make the mothers feel better, but at what cost for their children?

There was a short segment about Lauren Potter, an actor from Glee with Down syndrome, and how she grew stronger as an actor because they trusted her to be competent. There was also a short segment about RJ Mitte, who has another developmental disability: cerebral palsy. He was hired to play Walter, Jr. on Breaking Bad because the show wanted to represent reality rather than having an abled actor portray cerebral palsy.

The movie Forrest Gump had a fairly long segment in the documentary, but I noticed it barely grazed upon Forrest’s disability and spent nearly all the airtime focused on Lieutenant Dan’s story arc of becoming disabled, being angry, coming to terms with disability, and going on to have a vibrant, thriving life. It was a great analysis of Lieutenant Dan’s character, but I wanted that spotlight turned on Forrest, too. As I say, what content there was about autism and other developmental disabilities was pretty thin on the ground and added in, since the book that set the framework and tone for the documentary was only about physical disabilities.

Another reason for the low representation of people like me in the documentary is general societal attitudes and assumptions found in the larger disability community. Many times I have been spending time in communities of cross-disability activists and felt alienated as people unthinkingly (at least I’m really hoping they didn’t realize an Autistic was listening to them) talked about how worthy they are because “our minds are fine.” Sometimes the talk even goes so far as, “if there were something wrong with my mind I’d kill myself.” The larger disability community can be unfriendly to Autistics or simply doesn’t think about us enough to remember that we are part of the movement, too.

And part of that is our own fault for isolating ourselves in Autistic or Neurodiversity or Asperger’s spaces and ignoring the larger disability community. We really need to make the effort to reach out past our own issues because we risk being left out of disability representation that way. We also miss the opportunity to learn from a long-standing and results-achieving community when we isolate. We could get our own game so much more on point than it already is by spending more time actively studying what activists and advocates with other disabilities are doing. Finally, we’re cutting ourselves off from potential friendships with people of other neurotypes who care about accommodations and acceptance.

Along the lines of feeling excluded in subtle ways, Marlee Matlin (who I love so much) said, “Don’t look at us as different. We have the same brains. We have the same hearts. We all live and breathe the same air. At the end of the day, just be more open-minded and have passion, not sympathy.” This is such a beautiful message and I laud it—but it’s not entirely true. I don’t have the same brain as non-Autistic people.

That’s just it: I’m neurodivergent. I have a beautiful Autistic brain and it’s both my super power and my downfall. As I saw Neurobeautiful say in the Facebook forum for the Autistic Women and Nonbinary Network recently: “most superpowers turn into disabilities in an environment not built to accommodate them.” You may call it a minor thing that Marlee Matlin said we all have the same brains, but it did break my heart a little bit.

That said, I do think we have more in common with other disabled people than we do with neurotypical people who are not disabled. Danny Woodburn, an actor who is a Little Person, (side note: when Googling to see if I should capitalize Little Person, the first site I found was, coincidentally, a conversation between the actor Danny Woodburn and Roger Ebert) said something in CinemAbility that any of us could, sadly, easily imagine being said to the mother of an Autistic child: “Even when I was a baby in the late 60s, early 70s, people would approach my mom and think that she did something horrible in the face of God to deserve a child like me.”

Here’s to working together with our siblings in the larger disability community, to gaining more and better representation in the disability community and society at large, and to being part of the fight for a world where we are viewed as human beings—not plot devices, not inspiration, and not punishments and burdens.

Friday, January 18, 2019

A Documentary About “Scary” Kids Scares Me—On Behalf of the Kids

One of the families featured in A Dangerous Son (Source: HBO)
[image: A white family of four, with two young kids, on a couch together.]
Kit Mead
kpagination.wordpress.com

Content note: Discusses violence and abuse regarding children with mental illness and disability, and the Newtown shootings.

I'm not going to watch “A Dangerous Son,” the HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” I'm going to avoid it mostly because I have already read all of those stories. Again. And again. And again.

And I have found them incredibly disturbing each time—on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs points out: Across violent and abusive sets of environments, we—the kids—are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Parents saying we are desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

.  .  .

It’s possible to advocate for and with children who are struggling and vulnerable with some level of dignity, as I have pointed out before, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

.  .  .

After the Newtown shootings and a particularly bad Gawker article called I am Adam Lanza’s Mother—written by a parent about her 13-year-old son—Savannah Logsdon-Breakstone wrote an article describing being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:
"My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that Gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions. 
"Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose."
I Am Adam Lanza’s Mother inspired A Dangerous Son. The author is featured in the movie.

.  .  .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

Thursday, January 17, 2019

The World Is Such a Loud Place And It Seldom Stops Talking

Mute
Photo © dan_giles | Flickr / Creative Commons
[image: A red lit-up mute button featuring a crossed-out microphone symbol.]
Sara Earhart
seekingsara174.com

Hearing is the sense that gives me the most trouble to the point that I often wish I had a mute button for the world around me. Sometimes I even wonder what it would be like to have a cochlear implant that I could detach when sound was just too overpowering. The world is such a loud place and it seldom stops talking.

Some days are better than others. Sometimes my brain does a better job at filtering sounds toward the back of my mind, but most days the sound comes at me all at once in a jumble of confusing, overwhelming chaos. Each sound jockeys for position at the front of my mind as each insists I pay close attention to its deafening shouts. It’s an exhausting experience to be constantly inundated with such a loud, insistent world without the ability to filter any of it out.

Even now while I write this post in a relatively quiet room, sound is everywhere. The high-pitched chirping of a bird outside the window is joined by the electric whine of the TV (which is off), the shower running upstairs, a family member walking on the floor above me, a goose in the front yard honking incessantly, the walls and windows settling, the wind swooshing through the trees out back, an electric toothbrush pulsing, a door opening and closing, the hum of the ice maker, the neighbor’s car door slamming…All loud. All insistent.

I am very easily startled, overwhelmed, or distracted by sounds. I’m likely to jump at a sudden loud noise, and it can often be very painful. A lot of sounds are physically painful to me: fireworks (which I also feel as a punch in the chest), alarms, sirens, anything shrill, etc. Some are less painful but more overwhelming; those make me feel like I’m drowning: crowds, loud music, revving engines, etc.

These are some of the most extreme sounds for me: fireworks, fire alarms, sirens of any kind, pitch-bending (sliding between notes), dentist drills, wood saws or drills, squealing bike brakes, shrill voices, whistles, people whistling, motorcycles revving, airplanes overhead, loud voices/shouting, loud and unexpected sounds in general, high-pitched noises, tapping or clicking, people talking behind me, crowds, out of key music, hairdryers, vacuum cleaners…

While I doubt that these things are pleasant for most people, they can be absolutely excruciating to me.

It’s important to note that auditory sensory overload isn’t always related to sounds I don’t like. When I’m overstimulated, I can’t handle any sound. Not my favorite song or an otherwise pleasant white noise or even the sound of a loved one’s voice. At that point, any sound is toxic until I recover.

Here are some examples of my intense auditory sensitivities to give you a better idea of my experiences:

LOOPING

Sometimes a noise or sound gets stuck in my head. I call this “looping” and it can be maddening. Think about something like nails on a chalkboard. (Even typing that makes me physically uncomfortable. But that cringing sensation that a lot of people experience is how many sounds feel to me!) Imagine that sound getting trapped in your head and sort of echoing again and again and again–long after the actual sound has passed. This happens to me fairly frequently and it’s extremely painful and distressing.

ELECTRONICS

I did an experiment with a friend once while studying abroad. After months of being annoyed by the high-pitched whine of the old TV in the corner of the dorm kitchen, I finally grumbled, “It’s so LOUD!!” My friend looked at the sumo match on the TV, back to me, and then back to the cheering crowd on the screen. “Loud? Ok, I’ll turn it down.”

I shook my head. “Not the program. That shrill sound that comes from the TV.” He cocked his head and muted the TV–listening intently. To my surprise, he said he couldn’t hear it. I was completely shocked.

You can’t hear that? Seriously? It’s all I can hear…” We decided to do an experiment. I turned my back on the TV. He kept the volume muted and silently turned the TV on and off and I told him whether it was on or not based on the whining sound. I left the kitchen and started to walk down the hallway, calling back to him “ON! OFF!!… ON! OFF! No, STILL ON! Ha, tricky!” as I passed room after room.

I made it all the way down to the end of the hallway where I could still hear the faint sound of the shrill TV. When I got back into the room my friend was shaking his head. “Is that why you always turn it off when no one’s watching it? I thought you just really hated sumo or something.”


FIRE ALARMS

One year while teaching in Japan, my desk was located directly beside the fire alarm. I didn’t realize this because it looked different from the ones I’m used to seeing. (In some ways I’m glad I didn’t know because if I had, I may not have been able to relax.) One day, we had an unexpected fire drill and the alarm blared directly at me. It was actual physical agony. I can still remember the physical pain throughout my body and the extreme nausea: I almost threw up. I was on edge for the rest of the day—jumpy and fidgety until I could go home and sit in a dark, quiet room with both earplugs and headphones.


When I was a kid and there were safety drills at school, I would be a complete wreck waiting for the alarm, during, and for the rest of the day. It would make me anxious and physically ill for the entire day. I remember trying to be “tough” like all the other kids who could walk down the hallways laughing and joking, but I always had to shove my fingers in my ears and grit my teeth as I raced out of the building.


COPING

  • Ear plugs: I wear earplugs while I sleep and I have done for at least a decade. I can’t fall asleep without them; I can’t even begin to relax and let down my guard without them. I’ve started to bring earplugs everywhere I go and wear them in restaurants especially.
  • Noise-canceling headphones: When I first got my headphones, I wore them every chance I got but found that I panicked when I had to take them off for work. I think they actually made me more sensitive to sound and that was a horrifying discovery. Now I only wear them when I really, really need to avoid a sound that earplugs just won’t help with.
  • Stimming (Blocking or recovering from bad sensory input with good/neutral stimuli): Humming or singing softly to myself is one of the most effective tools to help me deal with auditory overstimulation and sensory overload. This works by blocking out other sounds and giving me some control over what I’m hearing. Unfortunately, it’s something that society has made me feel uncomfortable doing in public, but sometimes I can’t help but do it to survive. I’m getting better at doing it in situations where I need to.
  • Silence: I bathe in silence whenever possible. Silence is a breath of life.

Tuesday, January 15, 2019

Sesame Street's Julia: What An Inclusive World Should Look Like

[image: partial view of Sara, who has dark hair in pigtails and is
wearing a dark pink shirt, smiling. She sits with a Julia doll,
holding onto the doll’s hand. The Julia doll has bright orange hair
 in pigtails and green eyes, looks happy, and is wearing a pink shirt.]
Sara Liss

I wish that Julia the Muppet from Sesame Street had existed when I was a toddler and first learning (not very successfully) to interact with other kids.

I was desperate to play with someone other than my baby sister, her baby playmates, and our family friends. I didn’t know how to connect with the other kids my age, and most of them preferred for me to stay away. One or two of the girls at my preschool either liked me or took pity on me, on their own or with adult encouragement, and were my sometimes-playmates. (I don’t think my pre-school teachers assigned them to me as playmates, the way my teachers did every year from pre-K to 4th grade.)

I can say, though, that the only social interaction was the time my not-quite-friend Melissa invited me to play with her outside and then told off another girl who didn’t want Melissa to play with me. I guard that memory carefully, clinging to it as I try to forget the times I stood at the play kitchen or sand table minutes after the other girls had used them, trying to pretend I wasn’t alone.

I can remember most of the Sesame Street episodes and skits broadcast between 1989 and 2000. I’m 30 years old, and my youngest sibling is 23, and my brother’s occupational therapist and later babysitter had a burning hatred of Barney, which means I know the Sesame Street songs from that era word-for-word almost two decades later.

When I was a child, there were no openly autistic faces to us to latch on to as role models. But Sesame Street, so progressive that it moved its new programming to HBO to keep social conservatives from trying to kill the show entirely, was no stranger to disability even then. Linda, a Deaf woman who debuted on the show in 1973, was already teaching children how to sing in ASL back in 1976. Tarah, who had osteogenesis imperfecta, was showing off her skills as a wheelchair ballerina in 1993. But there still wasn’t anyone on Sesame Street with disabilities that also affected their minds.

(In the world of disability inclusion, disability is always physical first and mental/cognitive second, unless there’s been another mass shooting and we’re desperate to find something besides a gun to blame.).

When I was a child, Sesame Street coded characters as autistic—the Count, of course, and also sometimes Bert. Most autistic kids identified with the Count. (Personally, I found him terrifying, and may or may not have run away from him and his scary mountain and scary bats at least once. He wasn’t quite as scary as Ursula from The Little Mermaid, though, so I still have his “The Lambaba” word-perfect two decades later.)

I myself adored Bert, and, according to family lore, actually teethed on his nose. Most of all, what resounded with me was his bemusement at Ernie’s version of logic, which made literal sense and was reasonable from Ernie’s point of view, but always led to the wrong conclusion. (The cookies in bed sketch is a classic example.)

I had another kind of kinship with Kermit the Frog, who wasn’t a resident of Sesame Street but appeared in enough skits as a reporter covering Fairy Tale News for me to claim him for this essay. I was drawn to his high anxiety levels, his endless attempts to get everyone to just listen to him, to get everything in order for once in their lives, and the way heightened emotions stole his words and left him with screaming, flailing, and flapping as his only way to communicate.

But Kermit was never coded as autistic, not as far as I can tell. He was rather a giant ball of anxiety, almost certainly depressed, in an on-and-off relationship with an amazing woman who could have been a great partner for literally anyone else. (This is not an essay on the many, many wonders of Miss Piggy. Nor is it an essay on how the stereotype of a hen-picked husband needs to be rended from tip to toe and thrown to the piranhas. I can write that essay some other time, if anyone is interested, but I’m currently wearing my Joyful Autistic hat, and the Raging Feminist one will have to wait.)

Julia is different from all those other characters. Julia is openly autistic and doesn’t apologize for it. She has a home on Sesame Street and doesn’t need to be “fixed” to keep it. She’s not a single obsession, a savant, or a machine who needs to be programmed with the “right” words or social skills.

I look at Julia and see an autistic girl—an actual GIRL—who STIMS! and who is EMOTIONAL, so much so that her body can’t contain it! who USES HER BODY TO COMMUNICATE HER FEELINGS! She doesn’t need speech to express herself, and can say more with her body than words can contain, even when the NTs foreign to her world don’t understand what she means. She’s silly and goofy and strange and people LIKE HER FOR IT.

My new friend Julia has *real* friends, friends who didn’t need anyone to tell them that Julia was lonely because she was different and needed a special buddy to help her feel the same as everyone else.

Her friends think of her as an equal, not as a Special Task the grown-ups trust them with. Her friends don’t exploit her oddities for their own amusement or make fun of her in ways they know she can’t understand. They don’t leave her in favor of her “normal” friends when she breaks social taboos, and don’t leave her when she can’t answer their questions about who she is, or how she thinks, or why she can’t be like everybody else no matter how hard she tries. Her friends are the non-disabled peers I loved and followed as a child but could never seem to keep, the people I broke by getting too close when I was hopelessly broken.

It wasn’t until my second year of college that I found friends who embraced me and the autistic parts of my soul but weren’t autistic themselves. Calling them NT is probably a stretch. I’m pretty sure there’s something neurodivergent about people who creep along public streets in broad daylight pretending to be a raptor, complete with sound effects, and completely sober; and all of us had trouble passing in so-called normal culture.

They were and are more like me than any non-autistic person than I’d ever known. They love my flappy rants about administrative law at New Yorker speed, the same way I love their shared horror of the Twilight movies. We’re entertained, sometimes enraptured, frequently clueless, and sooner or later, baffled at why we’re still talking. They’ll probably never know why I’m so obsessed with the Chevron doctrine, and I will never understand what possessed them to go to the midnight release of the first Twilight movie. And that’s okay. We’re oddballs, but that’s a feature, not a bug.

I can’t be certain, but: I don’t think I’d have had to spend 20 years waiting to find friends who could love my autistic soul—but not have their own to match—had I met Julia the same day I met Big Bird, Mr. Snuffleupagus, and Elmo. I don’t think I’d have gone 29 years without being diagnosed, making three separate trips to Albany to be evaluated, just so I could prove a point. I don’t think my dad would shy away from me every time I talk about being autistic because he’d thought my mind was "fine" and never considered my social issues might be so “bad” I needed a disorder to describe them. And I don’t think my first female fictional friend would have been Baby Bop just because she was a girl, and there weren’t any girls on Sesame Street.

Sesame Workshop is finally teaching kids that autistic people are people worth the same as anyone else, even if their minds aren’t "fine." Her Muppet friends Elmo and Abby Cadabby know that she’s their equal. She can love and be loved without trying to make her life a game of pretend, a game there’s no way for her to win. She speaks with her loud hands and loud arms and loud body. She speaks in the wordless sounds she makes and the rest of the world tries to interpret, sometimes correctly, sometimes wrongly, and sometimes looking for meaning that words can’t express at all.

There’s a lot of Julia in me. I see her and I want to keep her safe from a world that sees difference and tries to fix it, even when there’s nothing to be fixed. I want to protect her from a world that demands conformity at any price, and punishes us when hurting ourselves is the only way to comply.

At the same time, I look at Julia and see a girl like me in the safest place I’ve ever known, who sees and does things differently and who isn’t scolded for it. I see adults who see her as a person, a disabled person, autistic through and through, and still knows she exists for her own sake. I see a fictional world that’s taught tens of millions of young children over generations numbers and letters and skipping rhymes and phrases like “please” and “thank you.” I see a powerful force in children’s education telling Americans everywhere to welcome me as I am. I see a world that’s always tried to include everyone, desperately trying to teach us to better people, and see that in this better world, there’s a place for me.

I wish that when I was little, I’d seen a girl like Julia on Sesame Street, and seen Sesame Street embrace her. I’m not a child anymore, but I’m so, so glad that she’s here now, and here for me.

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This article was previously published at kpagination.wordpress.com.

Monday, January 14, 2019

“Can My Child Ever Learn to Speak?” Authentic Communication and Autistic People

girl
Photo © Kasia_Jot | Flickr / Creative Commons
[image: Photo of a young blonde girl standing outside a
wooden door painted with aqua paint. Her legs are crossed at
the ankle. She is holding on to the door handle with one hand.]
Ann Memmott
annsautism.blogspot.com

Often, in my consultancy and training work, we get questions such as, “Can my child ever learn to speak?”

The answer to this is important, because, for a lot of parents of newly diagnosed autistic children, it’s easy to become misinformed or misled on this point. A number of organisations will be keen to tell such parents that without their ‘ACME Treatment X’ or ‘Potion Y with Added Secret Ingredient,’ their child will never speak, never learn to communicate. The parents may be told that most autistic children who do not use speech at (say) four years of age will never do so. “Early intervention to enforce speech is vital!” they’re told.

Is it?

Frankly, too much of this is scaremongering. It may lead to some parents being parted from a lot of their money, for treatments that are unwarranted, ineffective, or—in some cases—harmful.  We sometimes see autistic children pushed for endless hours to attain developmental milestones they’re simply not yet ready to attain.

Most parents of course only want the very best for their child. I do not doubt that many therapists are good people who also only want the best for the child. They may have been misled into thinking that early intervention is the Only Way, no matter the cost to the child. Little wonder that parents believe someone who seem to be providing an answer, even if the child seems distressed, bewildered, exhausted by it.

Am I saying that parents should not help their child or support their child in good ways? No, I’m absolutely not saying that. We’re talking about what is in an autistic child’s best interests here, though. I’ll generalise throughout.

Firstly, what do we mean by good communication? I’d say that it means a person is communicating authentically with one or more other people, using their own best way of doing so. Communicating with others about things practical, emotional, spiritual, enjoyable, intellectual or otherwise. Communicating in ways that means others respond safely and well.

Is spoken language the only way to achieve this? We might look at the Deaf communities and their use of sign language and technology for an answer here. It’s very possible to communicate very well, without using spoken words, with a rich and deep pattern of communication, a genuine alternative.

For some autistic children, it could well be that they won’t use spoken words as their way of communicating at any point during their lives. Instead, they may use a variety of authentic autistic ways. Perhaps through technology. Perhaps through other assisted/assistive communication methods. Perhaps through sign languages, or through any combination of other vocalisations, movement, gesture, pattern, rhythm, music, drawing, etc.

In 20 years of having the honour of working with and alongside countless autistic people of all kinds, I’ve yet to find one who doesn’t communicate. I’ve met a number of parents and professionals who don’t notice the communication, though. Or who had misinterpreted it. Or who were insistent that communication had to be the way they want it, when they want it, or it didn’t count.

Can autistic children and young people develop speech, if they are not using spoken language before (say) age 4? Yes. In fact, most do, according to research by Wodja, Mathy and Kalb (2012). The team examined 535 autistic children and young people with "severe" speech delay, and found that 372 of their subjects (7 out of every 10) managed to say phrases by age eight, and 253 (nearly half) could speak fluently at age eight or after.

What is the amazing ingredient that does this? Is it an expensive therapy? A pill or potion? A genetic scientist? No, it’s time. Quite simply, autistic children may well learn to speak at a later time than non-autistic children, and that’s the natural pace for us. Certainly, working with an autism-trained, qualified speech and language therapist is a sensible thing for many. Good therapists of this kind will look at all sorts of ways to communicate, and will enable the child’s own best way. But supporting and encouraging communication should never be about forcing autistic children down a path they cannot take, or are not ready to take.

I bring personal experience of speech delay to this subject: For the first ten years of my life, I could not use words to communicate with others in any social way. I could, in the latter part of this and with effort, repeat phrases or individual words well enough to make it seem like I was ‘communicating.’ But I had absolutely no idea what I was saying, or what it meant. I knew I was rewarded from making sound A, and punished for making sound B. But in no way was that communication: I wasn’t communicating a thing, any more than making an accordion play a note means it’s communicating with you. My natural, authentic communication was in pictures, in pattern, in colour, in drawing, in movement. It still is. And, as an autistic person, my natural non-verbal communication is also authentically different. I won’t choose to look into eyes to communicate emotion or attention, as doing so is painful, and prevents me from comprehending what’s said to me.

By the age of 11, I could make a small amount of spoken conversation with a trusted person, if I thought about it hard enough. By age 18, I could speak more. Some of my teachers failed to notice that I was in their classes, as they had never heard me speak—that was how good I had become at making myself unnoticeable, lest someone should try to talk to me. Awful, because I actually love being with people, and love sharing with them. It was assumed that I was just painfully shy.

In a world before most autism in young people was recognised, it never occurred to people that I was autistic and communicated differently. By my teens, I’d mostly learned to disguise (‘mask’) any visible trace of my autistic behaviour, out of fear of the responses of some non-autistic others and their bullying and ostracism. I kept my repetitive movements small. I pretended an interest in ‘things-I-should-be-interested-in,’ by displaying the ‘right’ posters for right TV shows and pop stars. By feigning the excitement I saw others show.

I recall trying to pronounce the right words at the right time, in conversation. How hard was it? By the time I’d heard something…translated it to pictures in my mind…thought about an answer in pictures in my mind…thought of some words to put together…and remembered how to make my mouth, lips and tongue move correctly, the conversation would have moved on. If I was not putting 100% concentration into it, I would also say the wrong word, or a mispronounced word, or say them too fast, too slow, too slurred, in a strange accent. Or respond by just describing the picture in my mind, which is not the communication expected.

Natural autistic communication is genuinely different. It was hell, trying to communicate in a way entirely not my own. Easier to be with a person who spoke 100% of the time at me, and my role was just to listen 100% of the time and occasionally agree. Using spoken language was like clambering up a cliff face in a gale force wind, weighed down with ever-shifting boulders. Clinging on in desperation, making my brain and body do something utterly alien to it, fearful of a wrong move, a wrong grasp of a situation. How much do autistic people have to care about others, to try to do this, time after time after time? I learned to talk, but the effort remains the same.

In my mind, I could visualise whole 3-D scenes, create incredible 3D rendering of situations past and present. In my heart, I could feel so intensely the emotions and joys of those around me. But my ways of sharing those emotions using spoken words would be deemed clumsy, insulting, or humiliatingly hilarious for others. So, I created with music, with art, with sharing unspoken but (for me) beautiful prayer and emotion. I communicated by movement, by rocking, by flapping. I communicated really well with other autistic people, and really well with animals. Some of my good friends are translators by trade, who have no difficulties understanding that I communicate differently.

None of my own ways of communicating were seen by those in power as communicating. None of it counted.

I’m in my 50s now, with a good job running a company, an achievement only possible with the support and encouragement of so many other fantastic autistic people and allies around me. I speak at conferences, on a subject I know well, amongst autistic colleagues. I train people, on a subject I know well, amongst autistic colleagues. I have to balance my time and energy very carefully to ensure I can speak when I need to.

How did I achieve this? Some therapy? No, just time and personal effort. And being punished if I did not. I wouldn’t recommend that for any child; it shows a deep lack of empathy for autistic individuals, and colleague Dr Damian Milton has much to say about this with his work on Double Empathy.

For me, using words is inauthentic—often as far from how I’m actually feeling inside as it’s possible to get. Speaking is a very poor ‘second language’ compared to what I can express through other means.

I am sometimes not able to use spoken language, in common with 80% of other autistic people (from informal online research). When too tired, too stressed, too unwell, in pain from sensory or social overload, I become as unable to speak as I was as a young child. This, to the point where I could be in any amount of distress or danger, and still not be able to utter a word. In reality, I might even be smiling when most in pain, most terrified.  

I would like us to think about this. We’re telling children spoken language is worthwhile, because when they’re in most danger, they’ll be able to ‘use their words’ to ask for help.

Will they?

And, if they do, will anyone listen and respond well?

If you go onto social media, you will find yourself awash with accounts from autistic people who asked for help, but were judged as ‘attention seeking,’ as liars, as fakers. As not being in pain, because they hadn’t done precisely the right amount of crying, screaming, grimacing, etc. You’ll also find yourself in the midst of a community grieving for all the autistic people now living with PTSD, all the autistic friends now dead, having taken their own lives because ‘use your words’ got them nothing. Those dead because some in the medical profession didn’t listen.

When I need spoken language most, it deserts me. It is a fickle friend, not an ally. When I do use it, it often gets me nothing, because language is only part of the hugely nuanced and complex social communication system of non-autistic people.

Why not give us things we can reliably use to summon assistance and communicate our whole selves, instead?

Using technology, I can ‘speak,’ I can ask for help. I can share friendship and love. I can add photos, and diagrams, and artwork, and charts, and numbers, and music. I can make my communication into the authentic me. I can share my faith and my emotions, authentically, and express all that is dear to me. Freed from the suffocation of having to use spoken words. Freed from the humiliation of others finding my speech amusing or insulting, or the outrage of those who misunderstand the difficulty and accuse me of ‘just not trying’ to be friends.

I think we have done a generation of autistic children a disservice, by saying that speech is the pinnacle of achievement. That if they can ‘use their words,’ life will be much easier for them. That people will like them more as a result. That well paid jobs will fall from the proverbial heavens into their laps.

I suspect that by forcing them to communicate inauthentically, we have set some of them up for a lifetime of exhaustion and misunderstanding of autism. A world where our different use of spoken language has been seen as just more evidence of us being faulty, a minority to be erased from the future. Where we have been misunderstood as rude, as lacking in caring about others and about the world around us.  Good evidence shows this is entirely mistaken for the majority. The researchers had been so keen to look at spoken words in a ‘correct’ formula that it has never occurred to them that many of us were communicating emotions and caring differently, I suspect.

“My child will never be able to tell me that they love me,” I’ve been told by a number of distraught parents. Yet when I’ve met the child, their love for the parent has been apparent to me from the outset. The problem is that the parents would only accept “love” if communicated in spoken words.

If you are the parent or carer of a fantastic young autistic person who does not use spoken words, your quest is to enable them to find their own best way to communicate. To really listen, with your heart, with your eyes, with your love…not just with your ears. To be patient and let them develop in their own natural time frame. To allow them to use their own best body language and movement, their own best choice of eye contact, or not. All, of course, with the love, help and support around them they need to enable them to thrive, autistically. With that good speech and language professional to guide you. The child’s future should not depend on being an inauthentic copy of non-autistic children.

Ask the #ActuallyAutistic communities online for some ideas and inspiration, and learn from them. There are some fantastic people out there, who are all too willing to pass on their wisdom on good social media pages, on blogs, in books or otherwise.

Most of all,  trust that your autistic child can thrive alongside others, whether with spoken words, or not. Do not be afraid to tell the next salesperson, arriving with a false horror story about how your child will never achieve anything without their ‘Patented Treatment,’ that you have more confidence in your child than they do.

Then, walk into the future, alongside that fantastic young person, sharing the journey together and truly communicating as two equal and wonderful people.

Thank you for reading.