Friday, February 15, 2019

Autistic Children and Toilets: Misunderstanding the Difficulties

A disorientating digitally altered photo  looking down into an empty toilet cubicle
Photo © Ann Memmott
[image: A disorientating digitally altered photo 
looking down into an empty toilet cubicle.]

Ann Memmott

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it. A tiled wall, a patterned vinyl floor surface. Would you put your feet on that floor? Could you work out what it was? Could you even reliably find the toilet?

Now let's add in the 'smellscape.' Perhaps air fresheners. Toilet cleaners. Hand soaps. Wee. Poo.

Then, let's add in the soundscape. Noisy pipes. The jet-engine-like flush. The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps. The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps. Then, of course, the pain of dragging clothing down in order to use the toilet.…coping with the complexities of the toilet paper and what to do with it, where to put it. Dragging clothing back up again, like someone using sandpaper against your skin.

Toileting can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max.'

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signaling to say they need a loo until it's too late. Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life. No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use. So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

But how easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some children are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner. Often on soft material that disguises the noise.

Yet some adults still say, "They're just animals—they just don't care—this is deliberate challenging behaviour—we must find ways to force them…" We even have playwrights writing a horrible play which portrays autistic children as animals, using this theme and dehumanising puppets.

Oh my. No.

Always, always presume competence. Presume that the child wants to learn. Always, always show respect and caring. Take good advice from autistic advisers and our allies, who are experienced and expert. Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design. Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child…think differently. Because the solution isn't the child being forced into that hellish toileting space. Instead, we should be working with the child to find answers to each part of their toileting nightmare. Thinking about making the visual experience understandable. Minimising the smells. Minimising the noise. Using soft towels, soft paper. Using clothing that doesn't cause terrible pain when it is pulled up or down.

Work together. Learn from one another.

Thank you for listening.

Monday, February 11, 2019

The Meaning of Self-Advocacy

Black and white photo of a person with long dark hair holding their arms straight out towards the camera, with palms facing outward protectively.
Image © Gioia de Antoniis  | Flickr / Creative Commons
[image: Black and white photo of a person with long dark hair holding their arms
straight out towards the camera, with palms facing outward protectively.]

Mel Baggs

Too often people define self-advocacy in narrow terms. They define it in terms of formal groups like People First or Autism Network International. They define it in terms of the ability to use standard language in a specific set of ways. They define it in terms of a specific method of going through the legal system, or other usual channels, to get specific kinds of things done. These are all valid kinds of self-advocacy, but they set people up to believe that only certain kinds of people could ever become self-advocates.

When one inmate in an institution fights back against the staff in defense of another inmate who is being brutalized, this is self-advocacy. I have only seen this happen once. She was brave and heroic in the genuine senses of the words, and she paid the price for trying to protect me.

When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he's done day after day, this is self-advocacy. When his initial peaceful methods are ignored in favor of restraining him and violently shoving him into a car so that staff can meet their schedules rather than listen to him, his decision to bite the driver is self-advocacy. I was there in the car with him.

When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she's been imprisoned and the people who keep her there, this is self-advocacy. That was me and too many others I knew.

When inmates of institutions (both traditional and those that masquerade as community), including those who are said to have no communication, devise covert means of maintaining communication and friendship in spite of staff's attempts to stamp it out, this is self-advocacy.

When people generally said to be incapable of communication find ways of making clear what they do and don't want through means other than words, this is self-advocacy.

When inmates and 'clients' devise both small and big ways of sabotaging staff's attempts to control our lives, this is self-advocacy.

In the book First Contact, Dave Hingsburger describes how people with significant developmental disabilities, normally believed to be incapable of self-advocacy, can and do engage in it:
Helen is her own self-advocate in that her "self" "advocates" that we adapt the world for how she experiences it. This is self advocacy at the grandest level. Why? Because it is immediately apparent that if Helen's personhood can liberate her—our understanding of the personhood of people with disabilities should do the same. Her statement of joy, of self awareness, shows that people who think that she would be better off dead—are simply bigots who choose not to know her. Helen is a radical person. Her message is about radical acceptance. Her life is radically her own. For those labeled "profoundly retarded," emphasize the word "profound."1
Then there's the question of things that get called self-advocacy, but aren't.

When a non-disabled person gets full of ideas about what disabled people should be saying and thinking about our lives, and holds us lockstep in his control while pretending to teach us all these revolutionary ideas, that is not self-advocacy. Nor is it self-advocacy when someone is constantly telling us that our existing methods of advocating for ourselves are wrong, that we need to ask permission to have a voice, and that self-advocacy can only be accomplished once we learn to behave and go through "appropriate" channels. Or when an institution sets up a "self-advocacy group" that it keeps busy doing meaningless work to siphon off the frustrations of inmates and prove to others that they're really about "empowerment." These things often get passed off as self-advocacy, though. Real self-advocacy involves respect and listening to us.

When a disabled person decides to disenfranchise entire categories of disabled people on the basis that they're not as worthy or capable of self-advocacy as her kind of disabled people, that is not self-advocacy. When people run around saying "I can make decisions of my own, but 'retarded' people shouldn't," "People with developmental disabilities shouldn't live in institutions, but can you please tell me how to lock up my crazy brother?" or even "It's perfectly natural for people like me to hate ourselves, that's just how we are..." that's more like oppression than self-advocacy.

There's also a common practice of getting a bunch of disabled people together for a recreation program and calling it a self-advocacy activity. Real self-advocacy involves getting the tools for real power—not bite-sized pieces of power, but the real thing—in the hands of disabled people. Too often people in these 'programs' are punished as showing inappropriate behavior if we engage in real self-advocacy.

Self-advocacy doesn't always look good on paper. It doesn't always stay within the sensibilities of people who want everything neat, orderly, pretty, and civil. People who declare a certain category of person to be uniformly incapable of self-advocacy are usually the same people who view that category of people as people who must be controlled rather than listened to. Self-advocacy doesn't mean staff get to pat us on the head, use the right buzzwords, tell us what wonderful little self-advocates we are, and then chastise us or put us on a behavior program when we get angry at them about their controlling behavior.

Self-advocacy is fundamentally about true equality, respect, and power, and about recognizing and changing the current imbalances in all of those things. Whether it is going through the legal system to close an institution, fighting back physically against intolerable surroundings, talking back to staff, sabotaging the power of staff over the lives of disabled people, being listened to when we communicate in non-standard ways, learning that it's okay to have a voice and make decisions, or passively resisting the dominance of others over our lives, real self-advocacy will always upset the status quo in some way.

No matter how legal and proper it is, self-advocacy won't be comfortable and cushioned. It will not give the people who are used to having power over us a warm fuzzy feeling of helping us, nor will their viewpoints on what we should be doing be able to dominate us and speak through us. They will not be able to pretend away the power inequalities between us and live in fairyland where everyone's the same and that's what counts. It will frighten them and force them to examine themselves. This will be true not only for non-disabled people, but to disabled people who are used to feeling superior to other kinds of disabled people.

I was once told by a surprisingly renowned "parent-advocate" that I only have a voice because Gunnar Dybwad gave me one, and that I should sit back and let parents and professionals do all the work towards closing institutions in my state. I beg to differ. Self-advocacy was not born with Gunnar Dybwad, no matter how much of an ally he was. It was born the first time a suspected changeling tried to run away before anyone could kill him. And the first time an inmate of an institution resisted staff power. The first time someone without a standard system of communication devised one of her own and tried to communicate basic things to other people.

Self-advocacy has been and is still often labeled intransigence, non-compliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, game-playing, attention-seeking, bad attitude, bad influence, babbling nonsense, self-injurious behavior, inappropriate behavior, disrespect, disruption of the milieu, catatonic behavior, social withdrawal, delusions, septal rage syndrome, and even seizures or reflex activity. Self-advocates have been tortured, intimidated, locked up, separated from our friends and lovers, and killed for our actions since before any organized movements existed. To say that the parent-advocacy movement or any other group of people created our voices is arrogant and shows real disrespect for the price many of us have paid for using our voices. We have always had these voices, in many forms. It is others who have shut us out, shut us up, and refused to listen.

1First Contact, Charting Inner Space: Thoughts about establishing contact with people who have significant developmental disabilities, by Dave Hingsburger. This book is available from Diverse City Press. It talks extensively about how to get to know and listen to people without controlling and projecting your values all over them, and about the roles all people can play in the self-advocacy movement.


Originally published at

Saturday, February 9, 2019

Starting Points for Understanding Autism


Photo courtesy the author
[image: Photo (light-painting) by the author: a spectral outline
around a hand and arm, raised as if to flap.]
I believe that the best way to understand autistic minds is in terms of a thinking style which tends to concentrate resources in a few interests and concerns at any time, rather than distributing them widely. I wrote in some detail about how this explains the observed features of autism in Me and Monotropism: A Unified Theory of Autism. Here, I want to distill what this means for living and working with autistic people, expanding on the six starting points for understanding autism that I identified in ‘Theories and Practice in Autism.’

I’m writing in the first person here, as a late-identified autistic adult who has worked and talked with many other autistic people in various contexts over many years. I believe that everything I describe here is a common experience for most people on the spectrum, but not necessarily universal. Many will be shared to various degrees by some non-autistic people—there are very interesting questions about the extent that different thinking styles overlap; brains really are very diverse, and psychological classification is a messy business. References, reviews of research and further resources for each section appear at the end.

1. Coping with multiple channels is hard

This can be sensory channels or other information streams.

This shows up in many ways; some of the most obvious ones are social. If my attention is focused on something else, I may not be able to take in what you’re saying. If I’m focusing on what you’re saying, I may not be able to do anything else (or I may need to do something else to absorb excess attention).

Most people assume there are multiple channels of communication going on in any conversation: words, tone of voice, gesture and eye contact. They also assume an ability to hold various other things in mind while talking: social context, social rules, relevant background facts. This works most of the time, for most people, but causes endless confusion in conversations between autistic and non-autistic people. Be prepared for misunderstandings where someone missed out on one or more of the channels you thought were conveying information.

Be aware that autistic communication styles tends to be different, too, for much the same reason. We are expected to maintain multiple channels of communication in socially acceptable configurations at all times, despite missing a lot of non-verbal cues throughout our lives. It often takes conscious effort to emote ‘appropriately’, display expected body language and suppress urges to regulate ourselves with motions people might find weird… all while trying to make sure not to say anything daft. Learning to do all this can be a valuable social skill, but it takes a lot out of a person, and it just doesn’t always work. If you want someone to be able to relax, they need to be able to feel comfortable being themselves—even if that looks odd to you. Learn to read our body language as best you can, but be aware that most people often get it wrong.

2. Filtering is tricky and error-prone

Sometimes I can’t tune things out, other times I filter them out completely.

Filtering is an active process, and it becomes much less effective when our resources are consumed elsewhere. That means our filters tend to be at their wonkiest when we’re worn out or having to keep up appearances. Any work done filtering out unwanted stimuli leaves less energy over for anything else.

Being unable to filter can be intensely uncomfortable, especially if it’s keeping you from something you want to focus on. Please take care of the sensory environment: too much noise and clutter and stimulation can be exhausting, painful and impossible to work with. Sometimes it helps a huge amount to be able to spend some time in an environment where we can control our sensory input, and not have to filter anything for a while.

Some of the most satisfying, relaxing and productive times are when we can enter a flow state, our attention completely absorbed in an activity. At those times, we may filter out almost everything else. If we can’t get rid of enough distractions to begin with, it becomes impossible to enter that state.

3. Changing tracks is destabilising

Task-switching is hard, and new plans take work.

It takes time and effort to get going, to change direction, or to stop. In other words, autistic thought tends to have a lot of inertia: it resists a change in state.

This can be great for working through complex logical puzzles, learning large collections of facts or just getting intensely absorbed in anything, but it can be very inconvenient all the same. Pulling all our tendrils of thought out of one thing and directing them towards another takes much longer than it does for a lot of people, and sometimes it’s hard to make them go where we want them—let alone where other people want them. Give us warnings, give us time, let us recover.

Don’t expect an instant transition from one thing to another, especially if it’s unexpected. It’s hard enough changing tracks even when we know what’s coming. A sudden change of plans means we have to completely reset and work out how to deal with everything about the new circumstances.

4. I often experience things intensely

Usually things that relate to my concerns and interests.

When my attention is fully focused on something, my brain seems to throw everything it can get at that thing. I credit this with my senses often seeming to be more intense and detailed than most people’s. I seem to get more than most people out of being absorbed in my interests, in general; I think this relates, again, to flow states.

On the other hand, unexpected input sometimes really shakes me. This might be something sudden, or just something that doesn’t seem to fit; either way, I can’t ignore it. It’s been suggested that the main difference with autistic brains is that they just have their ‘surprise’ setting turned right up; I wonder if our tendency towards intense surprise comes from having fewer interests or filters active at any given time, and finding the unexpected more jarring because of the intensity of our focus.

Incidentally, one of the side-effects of being surprised a lot is that you do sort of get used to it. I’ve often known autistic people to seem less surprised by things other people seem shocked by.

5. I keep looping back to my interests and concerns

It’s hard to let things drop.

It’s in the nature of interests and concerns that you loop back to them. If you’re interested in something, things are likely to pull your attention back to thinking about it. Monotropic minds tend to get pulled back to the same loops of concern again and again, especially when they have unresolved questions. People are terribly confusing, so we often have lots of unanswered questions. Sometimes a question might have been adequately answered really, but it still doesn’t quite feel like it, so we need to ask anyway. Other times, people are just impossible to predict, and there is no way to lay those worries to rest. These things can haunt us for years, and carrying them around can really sap your energy.

Still, I like how things are so interesting. Fascination is a fun thing, and I’m glad people have hardly ever tried to talk me out of my fascinations. I like working stuff out, and learning new things, but I also like to just get lost in things sometimes. Sometimes people are baffled by the sorts of things I like to do and learn, but really it’s their loss.

6. Other things that drop out of my awareness tend to stay dropped

I may need reminders.

I really need some kind of system to make sure things I’m supposed to think about come back to my attention. It’s so hard keeping tabs on lots of things at once, I’m bound to drop some of them if I don’t get reminded at the right time. This is complicated by the fact that if I’m in the middle of something, I really don’t want to let myself get pulled out of my attention tunnel for anything I can possibly put off.

This means there are all sorts of things other people might expect me to be thinking about, which I might not be unless I’m getting the right prompts. That includes things I genuinely care about, by the way; I hope nobody assumes I’m indifferent to things just because I fail to think about them. I just have so much else going on in my head!


I understand all of these features as manifestations of a monotropic thinking style: the more a brain concentrates its resources in a few interests and concerns, the more we should expect these to be true. Other theories can predict and explain many of the same features (see below) but I’m not sure that any other single theory leads us to all of the same predictions.

All of these taken together add up to a world that can be very difficult to deal with. It is no wonder so many autistic people experience so much anxiety, confusion and overwhelm. Our capacity for joy and focus can be some compensation for this, but it is often difficult to navigate a world dominated by people with relatively typical brains. If people can’t or won’t understand and accommodate our needs, problems accumulate. Discomfort can get ramped up higher and higher, until we have to escape or else we’ll melt down or shut down. This can last for a long time, and it is so often avoidable. I hope what I have described gives you some good starting points for working out how.

With the right strategies and understanding in place, most autistic people can thrive. Without them, life can be incredibly difficult, and much of what we have to give to the world gets lost. I wouldn’t change very much about my brain — I mostly like being who I am. I would, however, like to change many things about this world and how it deals with people who think differently.


If any of this helps you make sense of things, or changes how you relate to autistic people you know, I would love to hear about it. More important than that, please let me know if there’s anything here that doesn’t ring true for you! These ideas are being actively developed, by myself and others. There may be things we are getting wrong, and there are certainly things we haven’t fully worked out yet. One of the things I am especially interested in working out is what this all means for teachers, and I may soon produce a tailored version of this piece augmented by examples from educational practice.

Research, References, Resources

There is empirical work to be done to establish how well most autistic people feel these descriptions apply to them—beware anecdata, and all that. So far the best direct evidence for Monotropism as a theory of autism is probably Julia Leatherland’s unpublished PhD thesis, Understanding how autistic pupils experience secondary school, which found that Monotropism accounted for more of pupils’ reported experiences than any other single theory. I believe the basic features I describe here are all well-supported both by psychological research and the accounts of autistic writers, but Monotropism as a theory is still crying out for experimental work.

Notes for each of my starting points follow.

  1. Although it took until DSM-5 for perceptual differences to be included in diagnostic criteria, difficulty dealing with multiple sensory streams is attested since early autism research. Lovaas et al were not the first to record it in 1971, and see Marco et al (2011) for a systematic review. Mongillo et al (2008) found that difficulties with speech processing—perhaps unsurprisingly—were associated with social difficulties, and includes the fun fact that autistic people are much less susceptible to the McGurk Effect.
  2. It is well known that filtering is an active cognitive process, keeping the conscious mind from being overwhelmed with too much data. In the Predictive Coding model of the mind, much of what our brains do can be seen as filtering: non-conscious processes work on predicting the input coming in, and only what they fail to predict makes it through to conscious awareness. See Friston & Kiebel (2009) for a technical account, and Van de Cruys et al (2014) for more on the idea of autism as being a manifestation of excessive surprise. Karl Friston’s video on embodiment and Andy Clark’s book Surfing Uncertainty are both excellent introductions to this general approach to cognition, with a bit about how it currently seeks to account for autism.
        It seems natural to expect filtering to take energy, in the sense of both requiring and exhausting cognitive resources. So far I have only found research exploring the former, and not in an autism-specific context: Drummond et al (2012) found that sleep deprivation reduces visual filtering ability; Hasson et al (2013) found that a combination of emotional exhaustion and stress reduced tolerance for loud sounds.
        The National Autistic Society has a pretty good page on autism and the senses in general. On flow states in autism, see Milton (2017) and this video, also by Damian Milton.
  3. This is normally talked about as an aspect of executive function, which has been extensively studied with reference to autism—see e.g Hill (2004), and occasionally posited as an underlying explanation for all autistic cognition—see Russell (ed.) (1997). As I wrote in Autism and Executive Functions, I find it unconvincing as an overall theory of autism, and a bit of a blunt instrument for describing particular difficulties, but it remains an important idea.
  4. Intense experiences are at the very heart of the Intense World theory of autism (Markram et al 2010) which has important points in common with the Monotropism account. Its proponents are oddly reliant on a rodent model of autism, however, and see Remington & Frith (2014) for some very cogent criticisms, including the fact that unlike monotropism, it only seems to account for hypersensitivity in autism, where hyposensitivity is also commonly reported. Mottron et al (2006) write of enhanced perceptual functioning in autism, backing up the impression of sensory input often being both richer and more detailed in autistic people.
  5. Despite ‘restricted’ interests being a feature of accounts of autism going right back to the beginning, the nature and role of autistic interests has been chronically under-researched, and is very poorly accounted for by most theories of autism. However, see Grove et al (2018) for a study demonstrating the shock finding that pursuing their passions is a positive thing for autistic people’s wellbeing. The focused interests of autistic people are often called ‘special interests’, which is fine as long as you think along the lines of Special Interest Groups in tech, but not so much if you think of them as some weird, incomprehensible autistic thing, probably best suppressed. Mostly I prefer the term ‘passion.’
        On the anxiety front, Wigham et al (2014) found intriguing links between anxiety and repetitive behaviours. Both can be seen through the lens of perseveration, as can the way we keep returning to our interests. The idea that autistic anxiety is often associated with social difficulties is well studied—see e.g. White and Robertson-Nay (2004).
  6. This is another thing that’s usually discussed under the heading of ‘executive dysfunction’, not all that informatively. Mazfinch on Twitter has a handy list of possible reminder systems.


My partner Sonny Hallett has contributed greatly to my thinking about all this, and coined the useful phrase ‘loop of concern.’ That’s also them in the photo at the top wearing an excellent dinosaur jumper. The underlying concepts were largely formulated by my mother Dinah Murray, with Mike Lesser and Wenn Lawson. Damian Milton, Nick Chown and Richard Woods have all also contributed notably to my understanding.


This essay was previously published at Medium.

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

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 they 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
[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

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.