Thursday, October 31, 2019

Book Review: Communication Alternatives In Autism

Book cover with a background that is blue on the left and yellow on the right. A red bar in the upper center contains white text reading, "Communication Alternatives in Autism," followed by smaller yellow text reading, "Perspectives on Typing and Spelling  Approaches for the Nonspeaking." Below, two hands hold a white tablet device with a keyboard visible and white text on black reading, "Hello my name is ..." Below, red text reads, "Edited by Edlyn Vallejo Peña"
[Image: Book cover with a background that is blue on
the left and yellow on the right. A red bar in the upper
center contains white text reading, "Communication
Alternatives in Autism," followed by smaller yellow
text reading, "Perspectives on Typing and Spelling
Approaches for the Nonspeaking." Below, two hands
hold a white tablet device with a keyboard visible and
white text on black reading, "Hello my name is ..."
Below, red text reads, "Edited by Edlyn Vallejo Peña"]
Communication Alternatives in Autism contains the perspectives of ten autistic self-advocates, who "share their experiences with alternative forms of communication. Their narratives document the complexities that autistic individuals navigate—in both educational and community settings—when choosing to use approaches that utilize letter boards and keyboards."

Review by Olympia Eleni Ellinas

Autistic children and adults, around the world, are being treated as if they aren’t humans, as if they aren't capable of sentient thought. This is highly disconcerting, and I feel a need to aid change. Whilst reading this book, I felt relief at the end of each essay; the individuals ascertained a status of fair treatment and respect from others. The general theme of each person suffering intensely at first due to misunderstanding and discrimination, reminds me all too well that this is endemic: I hope that by reading this book, the general public and educators will realise that standardised testing rarely assesses autistic strengths properly.

The thing that strikes me the most is how all the autistics in Communication Alternatives in Autism so greatly strive for a high-quality education compared to many youths these days who dislike school and try hard to skip classes. The autistics in this book are representative of the general population of autistics in my experience, as I personally know many autistics who have passionate interests in certain areas and will pursue and acquire large volumes of information about them.

"Not talking is not the same as not thinking," says one of the authors,  Ido Kedar, [p. 69], and this is a common theme in this book. Just because one cannot speak, it doesn’t mean that one cannot possess thought, including abstract and independent thought. It does not mean one cannot learn. Yet Applied Behavioural Analysis (ABA) ‘therapy’ (in inverted commas because it is rather a form of torture!) is used on autistic children to basically ‘train’ them “like a pet,” says Philip Reyes [p. 154] and does not encourage independent thought, which is one reason much of the autistic community strongly disagrees with the practice.

In this book, I see examples of how ABA has been used on the authors, who have described it as no less than a living torture. One author, Amy Sequenzia, states that she was forced into ABA to ‘fix’ her, by people who discouraged use of Facilitated Communication (FC). Who think that any method for autistics to eloquently communicate is an anathema, who believe autistics are not people. Amy was placed in institutions. “Institutionalised ‘care’ is about non-disabled people celebrating their perceived superiority over us, the ‘not-quite-humans,’ while making us feel exactly like that: sub-humans” says Amy Sequenzia [p. 65]—this is a very Lovaas-influenced and extremely damaging concept. But, like the other authors, Amy’s life improves.

Criticism about FC are worth noting, but so is the fact that one cannot just expect an autistic child to suddenly walk to an iPad and start typing, when they do not have the motor skills. We need to initially assist them in typing. Initial assistance is even more important when autistic people have co-occurring conditions such as hypotonia and severe apraxia. An important point is made that FC often leads to independent use of a letter board or keyboard. Tracy Thresher [p. 44] states that he needed his hand supported whilst using FC, otherwise his hand types echolalic words and phrases. Many professionals against FC do not understand this, or the common theme in the way that FC trainers teach people like this book’s authors: those trainers know that autistics can learn. This is vital.

The editor of the book, Edlyn Vallejo Peña, is also the mother of another author, Diego. She had a drive to give Diego the communication choices he is happiest with. This is logical. Too many parents let preconceived judgements take over and refuse to acknowledge that their child is already trying to communicate, before they have a chance to formally communicate. Or they force one very limited style of communication, even if it doesn’t work. Children that use very basic communication tools often grow into adults using the same basic tools. Adults need far more choices than ‘I want a drink.’ And it is my belief that Augmentative and Alternative Communication (AAC) training that focuses solely on basic requesting and simple sentences is frankly abusive.

The essays in Communication Alternatives in Autism show how eloquent and descriptive many autistics can be when they are given the opportunity to learn to type their words out. Philip Reyes’s mother's persistence in obtaining the best communication method for him is key. Autistics, quoting author Samuel Capozzi, “have an incredible propensity for language and communication once given a reliable means to communicate” [p. 97]. Samuel’s speed in progressing, once he was ALLOWED to pass communication onto people, reflects well on the potential of autistics. Many autistics are a huge potential source of intellect waiting to be utilised. However, wisely, Samuel says “this list is not to boast, instead it’s a list to demonstrate potential” [p. 101]. We shouldn’t model him as a protagonist who’s elevated above the rest, many autistics out there have this type of potential, we just need accommodations.

Too often when autistics have very limited, or unreliable, speech, people think that that is all they have. Nope. Everyone is capable of communicating, plus this book shows that many autistics can have potent skills. Sadly, standardised tests do not consider the skills and competency of autistics with minimal speech and apraxic motor skills (the ‘mind-body disconnect’ [p. 107]). Testing labels such autistics as learning disabled (having intellectual disability), even when that is not the case.
“I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty and the pursuit of happiness” Ido Kedar, [p. 34] 
This quote really struck me. Autistics are often deprived of consistent forms of communication, and often treated with powerfully sedating medications because of “behaviour,” which can actually be frustration at not being able to communicate, and/or apraxic motor skills deficits. Apraxia can turn meaningful intentions into disorganised and chaotic involuntary movements. It does not reflect on the person’s capability or worth. In Ido’s essay, he clearly shows frustration at not having his innate abilities respected; it would be horrific if he were treated as if he lacked those abilities, for his entire life. Perhaps the diagnostic evaluations for communication disabilities should be redesigned?

While there is nothing wrong with having a learning or intellectual disability, sometimes people mistake apraxia or sensory processing differences for  those conditions. “[I]t is not a cognitive issue for me instead it is a motor issue” [Samuel Capozzi, p103]. I also experience this, I have a degree in pharmacology, but my behaviour often resembles that of a person with a learning disability, resulting in many incorrect assumptions. Another of the authors, Dillan, describes this eloquently: “I am sorry you don’t get to experience autism, but I am happy that you do not have to deal with being made to think something is so wrong with you that you should not ever think that you deserve more out of life” [p. 107]. This is the truth of autism. It can have many benefits. The disadvantages are often placed upon us by a loud and cruel world.

Apraxia is something I also have. It causes me to be quite wild and crazy in my movements and actions, much like author Larry Bissonnette, who after finding a communication avenue writes, “It was Larry the artist now rather than Larry the wild and crazy autistic guy” [p. 57].  Sadly, I have been denied the help I need to integrate my sensory and motor systems. Similarly, Emma Zurcher Long describes herself as laughing out loud when someone is sad, which leads to people thinking she has no empathy. This is not the case. She feels empathy very strongly, and she emotively describes this. But we autistics may appear to have inappropriate emotions in response to emotive situations, because apraxia can cause us to not act in a way we intend to. But we relate to emotions. We feel them.

Author Samuel says that his speech is full of “blurts” [p. 98]. I experience these too, the frustration that I have from not saying what I actually want to say is great, and often my speech just switches off from the exhaustion of it. Author Henry Frost’s section, called “Autistic Freedom,” made me think about my situation. I so strongly want to use AAC when I require it, but I still receive discrimination from healthcare staff and others. I end up experiencing my own “blurts,” which end up as derailing, highly pressured speech, not useful, and can be plain annoying to everyone.

A recurring theme in this book is institutionalisation. “Institutionalised ‘care’ is about non-disabled people celebrating their perceived superiority over us, the ‘not-quite-humans,’ while making us feel exactly like that: sub-humans,” says Amy Sequenzia, [p. 65]. And Larry was trapped in an institutionalised, low expectations life, and only breaks free later in his childhood. His story reminds me of the way I got out of being a revolving-door patient in psychiatric institutions, being misunderstood and mislabelled. The term ‘low-functioning’ used to describe so many autistics like Larry is an example of how useless and abusive that term is. Larry discovers his talent in the arts, and he makes a career out of it. Low-functioning, did you say? Functioning labels are a moot point, as Samuel describes on p. 94.

The harsh reality of a world that won’t consider the intricacies of autism is stated: “I was doomed to remain trapped,” said Dillan Barmache [p.108]. Professionals just see the outer layer of autism. Dillan emotively describes the psychological pain he felt when he was misunderstood, and measured solely by his apraxia and not his true capabilities. The theme in these essays comes to show that ‘thinking outside the box’ works, whenever an educator sees beyond the apraxia, when behaviour is not always communication.

As an aside, I enjoyed author Henry’s classification of ableists, and his point on how special education classes too often disserve all students: “teachers’ attitudes affect performance” [p.129]. Teachers who do not want to acknowledge a pupil’s abilities will only hinder them. Special education classes too often do not challenge pupils. Amy [p. 62] states, “[t]here wasn’t any learning” in her special education classes, but that she had the “expectation was that [she] reacted to any event, changes or demands in a non-disabled way.” I personally am thankful that my parents refused to ever have me in inappropriate classes and placed me in a private gifted education primary school, after I had been expelled twice. I flourished in my school. If I had been forced to endure inappropriate education merely because my behaviour was problematic, I wouldn’t be alive today as the failure of the system would be unbearable.

Ido [p. 80] describes how professionals who organise special education programmes and ABA training often have most things about teaching students like him all wrong. And if this is realised, these professionals then clash with the parents and the child. Ido [p. 87-91] outlines advice to educators and parents, showing that he himself is a good educator. Perhaps autistics should educate the professionals?

Henry states “the best early intervention for them as parents would have been meeting and learning from disabled people” [p. 128]. Only disabled people can say what disability feels like. An essential concept needs to be taught to all educators: “[o]nly a person by your side who has total faith and confidence in your having thoughts that are intelligent even when you are out of control will you ever have any hope to be able to handle all the challenges that really never stop happening” [Dillan Barmache, p.113].

Dillan also has a section, “The Guide to Reaching Your Students” [p.117-121], which gives logical and compassionate advice to all educators of nonspeaking autistics. About the state of special education, he states, “it’s not early education, it’s early torture!” [p. 119]. Seeing the autistic as a person with feelings and thoughts, not just a set of deficits, is what is needed. “No kid should ever grow up feeling that they or their neurology are their problems” [Henry Frost, p. 126].

I grew up thinking that I was broken, a set of faulty goods. But now that I am surrounded by friends and helpful family members, I am building up self-confidence. Emma’s private non-special schooling is what should be more common. Philip’s experience of meltdowns when first going to mainstream education is pretty much universal for autistics. It reminds me of when I was having meltdowns in my Montessori nursery school because it was noisy and lacked structure. I struggled to learn there. Like Philip, I resented the condescending way that so many people talk to apraxic autistics; I detested being talked down to in simple terms as a child; I felt relief when I was talked to like an adult.

One must not neglect accommodations in mainstream education for autistics, so a theme in this book is integrating autistics into mainstream education. But, Henry says, “accommodations are not optional for access” [p. 130]. Here in England, the Equality Act and the Autism Act are supposed to enforce ‘reasonable adjustments’ (i.e. accommodations). Yet even now, in 2019, accommodations are often not made for disabled people, in education and employment. Then people’s capabilities are being failed by the system, particularly in special education, which also often expects the pupils to fail. This is why Rapid Prompting Method trainers can be a relief, as they expect their students to be capable.

“No one expected me to fail. They thought I was intelligent, ” says author Rhema Russell [p.168]; . Rhema’s voice is being heard all around the world, she has a gift of getting the message across in quite exquisite language. She also makes a point about repetition not being helpful for many autistics. Many of us get it the first time. I take in everything, there is no filter for me. Yet in my second school, I had things repeated to me often. I didn’t need that.

The book also stresses that inclusion is important, but, as Larry states, we autistics need more than inclusion as mere politically-correctness. We need to be with peers and be a part of their lives, and have friends, just like any other person. Real inclusion means being treated the same, and not exaggerating differences. We need to end the segregation of autistics; it is grossly damaging and it teaches the falsity that autistics are not good for the mainstream world. As to why so many people cannot see that “inclusion is including all learners” [Henry Frost, p. 132], I do not understand. UK schools could learn a lot from the inclusive arrangements in America. (As an example, out of 700 girls at my secondary school, when I was in year 10, I was the only autistic pupil.)

The sensory world of autism is also emphasized in this book. The way that Emma [p.130-131] processes sounds is something I have read about before in a book called The Neurobiology of Autism (2nd edition). When I hear speech, with a moderate amount of background noise, I will hear the words as a series of syllables; I must manually add up those syllables in my mind, to form the words (Emma’s mind “hears all sounds equally and does not discriminate” [p. 150], a common auditory processing disorder phenomenon).

I relate to Emma to a high degree and have watched some of her YouTube videos. She also has an expansive sensory memory: she says “My brain doesn’t think in words the way most people’s do” [Emma Zurcher Long, p. 149], and, “I wonder if I am too aware of my surroundings” [Zurcher Long, p. 148]. I can confidently say that such a memory is almost the rule in autism. I know someone with a full sensory eidetic (photographic) memory, and I myself think cinematographically; my brain never switches off whilst I am awake, and even my dreams are full sensory.

Emma is sensory seeking, especially to music, like me. She does not just love her music, she needs her music. Similarly, Rhema states that “[n]umbers each have their own notes that make a beautiful song” [p. 166]; this is synaesthesia, which is common in autistics. Autistics are often diagnosed as also having ADD/ADHD, but I believe it is in fact the sensory hyper-alertness that comes with autism, that distracts.

This book is a good start in demolishing old beliefs about autism. This is appropriate. I am writing a textbook on the neurobiology of autism and I hope to do this too. Autistics, like the authors here, given the opportunity, are fierce advocates. Communication is a human right. Autistics have been through so much misunderstanding, so much torture. It is vital that people listen to us about our lives.

Monday, October 28, 2019

What Is Sensory Processing Like For Autistic People?

Sensory Overload
Photo: Sensory Overload by Jamie Grant | Flickr / Creative Commons
[image: High color contrast photo of a light burst, seen from through a
car windshield from the perspective of a rear seat.]

Reid Caplan

Have you ever had a conversation like this:
Autistic person: "I need to leave because the lights here are too bright." 
Non-autistic person: "But it's not bright in here at all!"
Many autistic people have had this conversation, or one like it. We might notice things like sound or light in a different way than others. That's because most autistic people have different sensory processing than non-autistic people.

Sensory processing is how your brain thinks about and reacts to your senses. When we think about our senses, we usually think about the five main senses: sight, sound, smell, taste, and touch. But there are other senses, too, like hunger, thirst, temperature, and pain.

Everyone processes their senses in different ways. But autistic people are more likely to have big differences in our sensory processing. Many autistic people feel certain senses too strongly. Feeling like lights are too bright, like we talked about earlier, is one thing a lot of autistic people experience.

We may also be sensitive to loud noises, or how our clothing feels on our body. We may not be able to eat some foods that taste too strong, or have certain textures. We might not be able to stay in a room that is too hot.

Autistic people might also feel certain senses more weakly than other people. For instance, we might not realize that we are hungry or thirsty. We may not feel pain as strongly as other people do. This can also mean that we might love really spicy foods or strong smells that other people can’t handle, because otherwise we cannot taste those foods or smell those smells.

Our sensory processing can also change over time. We might feel a certain sense really strongly one day, and not notice it the next. We might love how a shirt feels now, then not be able to deal with the texture of the fabric later.

Sometimes, our senses overwhelm us. This is called sensory overload. It may make us so upset that we have a meltdown. Our sensory differences can be a good thing. We might get comfort out of a certain smell or taste. Stimming—like rocking, flapping, or playing with a fidget toy—can help us control our senses and feel happy. We might notice things that other people miss.

Sensory processing differences are a big part of being autistic. But non-autistic people don’t talk about sensory processing very much when they talk about autism. Non-autistic people usually focus more on how we behave than on what we’re feeling. They might care more about making us behave differently, instead of trying to understand why we act the way that we do.

A lot of autism therapies try and make autistic people look and act “normal.” These therapies don’t make our sensory differences go away. But they make us feel like we need to hide them. They tell us that the way we process our senses isn’t “normal.” They tell us that when we behave differently because of our sensory processing, that we need to act “normal” instead.

Think about the example of an autistic person who feels like a light is too bright. A non-autistic person might think the light isn’t bright. They don’t have the same sensory processing experience as the autistic person. So they try and say that what the autistic person is feeling isn’t true. But telling the autistic person “the light isn’t bright!” doesn’t help them. It won’t make the light feel less bright. It just makes the autistic person feel like they need to stop talking about it.

An example of someone being told their perception about lights is incorrect.
[image: Captain Picard from Star Trek: The Next Generation yelling what is
written in white all-caps text: "There are... four lights!!!"]
When someone tells us that our sensory processing isn’t “normal,” it shows us that they care more about their own experience than the fact that something is hurting us. And when someone only focuses on their own experience, they are less likely to help us when we have trouble with sensory processing. Instead of trying to make us “normal,” people should accept that we are autistic. They shouldn’t try to change who we are, or how we process our senses.

It’s also important to think about this when we have meltdowns. We can’t control when we experience sensory overload. It does not help to blame or punish us when we get overwhelmed. Giving us space and showing you care about our feelings is the best way to help.

Just because we can’t change how we process our senses, doesn’t mean people can’t help us when we have trouble. There are lots of ways people can help us when we have problems with sensory processing. If it’s too bright, you can turn off the lights. You can take us somewhere darker to take a break. You could give us sunglasses. Just asking how you can help is a big deal!

Autistic people get help with our sensory processing differences every day. We might get help at school or work to be able to do our best job. Our family and friends might help us make our home more comfortable for our senses. We can learn ways to help ourselves, too. We might start carrying sunglasses with us if lights are hard for us. Then, we can put them on whenever it gets too bright.

Autistic people process our senses differently, and that’s okay! Autism makes us who we are, and sensory processing is an important part of being autistic. People should try and understand autism and how it makes us different, instead of trying to change us.

Friday, October 25, 2019

Autistic Joy as An Act of Resistance

Jennifer White-Johnson

I was recently asked how I came to understand and appreciate my son's expressions of Autistic Joy. How is joy usually characterized? The absence of sadness? Unbridled gladness  and glee? That is Knox, every. single. day. He emanates a spark and a joy that always reminds me that life is worth living, that waking up in the morning can and should have purpose. That taking the time to capture that radiance can be a light, showing how Knox interacts with happiness itself when surrounded by the heaviness of this world. For the past seven years I have used my camera to capture Knox's story as he chooses to tell it—through his interactions, his spinning, his soulfulness, and yes, his unbridled joy.

Photo © Jennifer White-Johnson
[image: Smiling young Black boy, with arms raised and
eyes closed, inside a cloud of rainbow-shimmery bubbles.]
Sharing visual narratives of my son’s Autistic Joy has allowed me to highlight what I often didn’t see depicted in the media. When Knox was diagnosed as Autistic at three years old, our community was supportive, but the common expectation after a diagnosis is instant behavioral intervention and treatment. The common expectations from Black and Brown parents is that you keep your Autistic kids in line. Keep them steady, not letting them waiver in fear of what they may face as they grow. Families of color are often forced into silos, not knowing where to turn next, afraid of unjust stigmas sometimes coming from within their own communities.

The depiction and representation of #AutisticJoy and especially #AutisticBlackJoy in media has been slim, often overshadowed by the same predominate white narratives. Autistic communities of color aren’t always given the consistent equitable freedom or space in media, printed or electronic. I spent time trying to find and connect to viable Autistic Community celebrating Autistic lives of color in my state, and didn’t find many. I realized I had to reclaim the narrative and begin sharing through my art making space for dialogue and engagement. 

Photo © Jennifer White-Johnson
[image: Photo of an ecstatic Black toddler boy chasing bubbles.]
I finally began to find it when connecting with other Neurodivergent families of color and Autistic adults. Reading, listening, watching Autistic adults practicing self advocacy within their communities and platforms. I knew Knox’s self advocacy was exemplified through his joy as a true act of resistance.

Not long ago I encountered a few people who tried to challenge the validity of Knox’s joy: I posted and shared a video for an Autistic dancer, friend and activist of color, and in the video Knox was shown spinning, stimming, and dancing during his birthday week. A few questioned how his joy can be seen as a form of self advocacy.

Why anyone would want to stifle an Autistic kid’s joy? The Autistic community immediately came to my rescue showing Autistic Joy at its finest!

Photo © Jennifer White-Johnson
[Image: Overhead photo of a young Black boy with magnetic plastic
letters and Lego trains, on a train track play mat. Next to him is a
magnetic whiteboard with letters spelling, "RESist Hate".]
The importance of showing Knox's joy increases the visibility in the lives of Autistic children of color. Moments that show the world that being Autistic isn't something to be ashamed of, it is beautiful, luminous and shows that being joyful shouldn’t be masked. It is a natural and valuable form of human diversity. Equipping Knox with an endless and unconditional amount of love is what carries him through each day. We see kids and adults of color being attacked everyday for just living their lives. Acceptance and support is what encourages Autistic kids like Knox to advocate for themselves. This joy cannot and will not be robbed from Autistic kids of color. 

Often the Neurodiverse community are excluded from artistic narratives and creative spaces, thus we gladly create our own, taking ownership of our stories and telling them how we choose to tell them. Unfiltered and honest. My role as a mom is to help my Autistic son embrace his playfulness, as I continue to embrace mine. As a black and brown mom I want to focus on the joy of my kid’s beautifully Autistic self. Amplifying that JOY is what can unite us, breaking the cycle of assimilation, breaking the cycle of unjust stigmas, and infusing the narrative of soul in the lives of Autistic kids and adults! 

We instill in Knox that every unique aspect of who he is beautiful. Using joy and creativity to create the framework setting our own tone for Autism Acceptance. There is heart and soul in the journey that breaks through the stigma of highlighting #AutisticJoy in Black & Brown lives. It is up to artists and designers to use our tools to further the narrative of Autism Acceptance and its visibility in the lives of people of color! The conversation must continue, the path must be set, making space for those who choose to honor the beauty and the soul of Autistic Joy.

Tuesday, October 22, 2019

OK, So We have AAC: Now What?

Photo courtesy Miss A
[image: An iPad screen with the app Speak for Yourself,
and a list of animals in the message bar:
banana, cookie, cat, dog..."]
Miss A

Access to AAC—Augmentative and Alternative Communication for people with speech disabilities—is a fundamental human right, but it’s one still that tends to be forgotten and overlooked in many spaces today. And many people are just hearing about AAC, or gaining access to it for the first time.

The first few steps in using AAC can feel overwhelming to families and professionals new to this journey, because it is essentially learning a new language. Many people have fears about “doing it right” and “doing it enough.” I promise that you can do AAC. You can do it. You must do it. And it will be worth every step. How?

Get excited. It can be really easy for AAC to be seen as a chore or “another thing to do.” It can seem like that to families, to professionals, and to AAC users themselves—especially when drilling methods are used to teach its use. It’s really important for all of us that we don’t associate AAC with “work.” We need to stop seeing on AAC as a way to drill our students on all the things they already have a way to say. We need to see AAC as a tool that allows our students to express all the other things they have to say.

This isn’t to say that learning a new language isn’t hard (it is) or that magic moments happen will every single day. You will be learning to read and to write and to speak a new language, and all of these things can be challenging at times. But they are all things we see as worth it, because of the long-term benefits. We find the joy in all of the moments along the way. The first time our child spells a word by themselves, the first time they “read” their favorite memorized picture book, the first novel we pick out. AAC is like that. Sometimes easy, sometimes hard, and always worth it.

Make sure the system is available. This is the first thing I always tell families or new teachers to do. Spend the first few weeks getting into the habit of always having the system. Problem-solve what you need to make it happen, whether it’s straps, a Post-it note on the door, a different case, etc. Assign staff members who get systems out of backpacks. Figure out a plan and space for charging if your AAC is high-tech, like an iPad or a dedicated device. This shows your student that you truly value their AAC system, that you believe in its importance, and that you want to hear what they have to say. It’s also really hard to model on or use an AAC system if it’s not there.

Assume intentionality. Please, please, please, please, whatever you do, please never say “I don’t think they meant it” in front of a student. I wish you wouldn’t even think it, but please don’t say it. Always respond as if your student meant it.

There is no harm in this assumption, but there is so much harm in telling kids’ that you do not believe their words. If you don’t understand, be honest. Ask. “I don’t understand what you mean, can you try telling me another way?” or “Hmm, I have to think about that, can you tell me more?” These are not hard things to say.

Encourage exploration. Treat a talker like a voice. Do not take it away. Do not remove it or block it. Do not put it on the teacher’s desk to be used later or when it’s appropriate. You cannot do this with speech, and so you cannot do this with a talker. Exploration is wonderful. Exploration is learning. Exploration is ownership.

There are a million reasons for children to babble and stim and enjoy their systems. They could be learning the locations of words—how else will they find them, especially if they are not yet reading and spelling? They could be playing with sound and exploring words and language, just as young ones do when first learning how their mouths can make different shapes and noises. They could be engaging in self-talk. They could just be having fun with sound, and that’s fine too. They have a right to autonomy with their AAC systems, the same autonomy that they would have with their speech, the same autonomy they should have with their bodies.

Familiarize yourself with the language system. Adults often complain about not being able to find words or finding systems not intuitive. I’ve found the hands-down best solution is to explore the system. Find a picture book and comment on all of the pages—with the AAC system. Watch a favorite TV show or movie, one where you know all the best parts already, and do the same. Think about words you might want to use on a daily basis—search for them. It truly comes down to practice. There’s a reason so many adults tend to prefer the system they know the best!

Once you’re familiar with it, it becomes easy. If you don’t have access to the system itself, see if you can get access to a low-tech version, watch videos of people using it online. Give yourself time and grace to learn something new, but keep learning it.

Model, model, model. And then—start modeling. Modeling is a fancy word for saying “talk with the talker.” Don’t overthink it. When you talk, highlight one or two of the words you say on the talker. If you’re wondering what your child could be thinking, highlight one or two possibilities on the talker (“I wonder if you’re tired? Sad?”) Start with modeling just a couple words or modeling at meals or spending some 1:1 time with your student’s AAC system and their favorite toy.

Yes, you can start that small. Yes, you can start by modeling 3-4 words as the opportunity arises during the day. Yes, you can start modeling by talking all about food and drink and favorite TV shows, or other likes or dislikes at the dinner table. Just don’t make it work for them or for you. Don’t make it “say this right now.”

Think of your goal less about “doing it right” and more about “getting comfortable with AAC.” I’ve seen fear of being wrong all too often lead to no modeling. And I promise some modeling, modeling with mistakes, modeling slowly, all of it is better than no modeling.

Yes, there can be more to AAC. Yes, there are other things to think about, amount of modeling and vocabulary and recasting and probably some other fancy terms. I’m not denying that. But it all starts here. Don’t overwhelm yourself with dozens of articles and stress about doing it right. This is the foundation. This is what everything else is built upon. Make this strong.

Become so reliable about having the device that you feel naked the one time you forget it for five minutes. Get so comfortable with responding and modeling with AAC that your child or student never, never, not for one second, ever doubts how important you see their system and how valued you see their words. Everything else comes later.


A version of this article was previously published at

Wednesday, October 16, 2019

How to Plan Events That Prioritize Accessibility

Color Communication Badges by Button Justice League, on Etsy
[Image Description: Three 1.5 inch pinback buttons each with a vivid color,
a bold black word and a black shape underneath the text. From left to right:
a "Red" button with a octagon, a "Yellow" button with a triangle,
and lastly a "Green" button with a circle.] 

Lydia X. Z. Brown

[Note from Lydia: This originally appeared on Twitter as a thread on 4 June 2018, and is an incomplete list of suggestions.]

Some tips on access-centered event/program organizing/planning (some are mine; many I learned from other fabulous folks):

(1) When you put information about the event online, whether on (a) a website, (b) in email announcements, or (c) social media, only include images if you include alt-text and text-only captions.

(2) Don't rely on online/email/social media to get the word out.

Call people too. Many comrades with intellectual disabilities strongly prefer phones, even if they can use the internet and email. (And many can't and/or are actively deprived of access or training.)

(3) Visit any physical location IN-PERSON before confirming it.

If you're not familiar with access, bring comrades who are blind, low-vision, physically disabled, and/or users of mobility aids with you. If you have money, PAY them for this work.

Only host in accessible locations.

(4) If you're planning and able to put any money down, budget for ASL (American Sign Language) interpretation, CDIs (Certified Deaf Interpreters), and CART (Communication Access Real-Time Translation) captioning in advance, from the get-go.

If you don't have access to funds, plan to secure volunteer interpreters/captioners in advance. Like, at least weeks in advance if not more.

(5) Don't put up promotional videos, live videos, or videos afterward, unless they're captioned and transcribed.

For live videos, it's OK to ask community members (ahead of time) to volunteer to live-caption.

(6) Tell people in advance, in writing, out loud, online, any/everywhere, to arrive scent-free. Give pamphlets with pictures if people need help understanding.

Don't ask for it as a preference; enforce it for the health and SAFETY of participants and community members.

(7) 24 hours before an event, check any/all bathrooms, public areas, etc. for artificial fragrance dispensers and REMOVE them.

Day of, bring baking soda so attendees who forgot or ignored message can be scent neutralized by putting some over their clothing.

(8) If your event/program is public, make sure any printed materials are available in LARGE PRINT (at least size 20 font if not larger) and Braille, in advance, even if no one asks about it ahead of time.

(9) Encourage people to use name tags. All of us who are sighted but faceblind (prosopagnosia) will thank you.

Create an (unobtrusive) opportunity to add pronouns to name tags, but don't require it or pressure people to do so.

(10) Consider who is leading and organizing your event/program.

If this is a demonstration and/or rally, are community members most/directly impacted by the issues the ones leading the charge/call to action, or choosing the speakers/slogans/leaflets?

(11) If this is a conference, community education event, or really anything, is your organizing group or speaker lineup all pale, stale, and male?

Similarly, did you just look for a single token person with one or more marginalized identities, but do no relationship-building?

(12) Consider using communication badges (social interaction badges). This system was originally developed by autistic folks and cousins at Autism Network International, alerts others to a person's dis/preference for social interaction with others.

Imperfect but still helpful.

(13) If the event is taking place in a physical space, give information about which entrances have level entrances vs. which don't (and if stairs, how many stairs); public transit access; and parking.

(14) Provide childcare. Plan for this in advance, both in terms of money and/or community volunteers. Advertise this.

(15) Enable opportunities (but not pressure or requirements) for young children to participate/be present in your event/program as well!

(16) If you're providing food, share menus in advance, including ingredients (as much as possible).

Provide phone and/or email for the caterer or community member preparing food so folks can ask about food.

At minimum, try to have GF, dairy-free, vegan, certified kosher, AND meat options.

(17) Day of: Label each food item by ingredients in large print and Braille, with special attention to common allergens.

Make calorie/nutrition information available but not displayed prominently.

(18) Announce in advance, repeatedly, in writing, online, out loud, and during any event/program, NO flash photography AT ALL.

Strictly enforce policy by asking people who can't/won't follow policy to leave.

This is a health and safety issue. Some people with epilepsy could die.

(19) If your program/event costs money to go to, make it sliding-scale or pay-what-you-can on an honor system.

You can tell people how much it would cost to break even (i.e.,  "break-even fee would be $65/person") and then let them decide how much they can afford in advance or at the door.

(20) Remember when ASL and CDI interpreters are present, they are there for benefit of HEARING people, not only d/Deaf, HoH (Hard of Hearing) or DeafBlind people.

If you don't sign, you need and benefit from the interpreters.

(21) If there's talking, as in a meeting or a big public rally, have only one person talk at a time. Otherwise interpreters can't keep up. Deaf/HoH/DeafBlind people can't keep up. People with auditory processing disabilities can't keep up.

(22) Use the microphone. It's an access issue.

Don't just assume you don't need one because you can project. I can project VERY well. I still need to use the microphone unless everyone in a space explicitly states they do not need or want it.

(23) If you have sound equipment, check, test and configure it BEFORE the event to make sure there is as close to zero chance of accidental microphone/speaker feedback as possible.

Please don't unnecessarily send autistic community members into meltdowns.

(24) If this is a whole giant conference or retreat or summer program, etc., don't follow these tips for the disability session/strand only.

These tips apply to your WHOLE event/program. Disabled community members deserve to have meaningful access to all parts of your thing.

(25) If you make videos/audio available online after the event/program, don't do so UNTIL you can release the captions and transcript.

Deaf and Disabled folks have to wait all the time for delayed and/or denied access.

We promise your abled community members can wait too.

(26) If this is a protest, demonstration, rally, or direct action, tell EVERYONE participating the plan IN ADVANCE.

You can maintain operational security and also not put multiply marginalized community members at unnecessary risk.

Examples following:

  • Tell folks if it's going to be an arrest action. Give option for folks who can't risk arrest but want to be physically present.
  • Tell folks how much walking will be involved, in distances, not minutes or time estimates. (Scout out the route in advance for accessibility.)

(27) Remember when people disappear and/or go missing that oppression often works by enforcing isolation.

Be extremely wary of snitchjacketing as a tactic used to sow distrust and break up organizing.

If concerned about a specific person without evidence, you can be careful without excluding them.

(28) Whether it's a march or a conference, TAKE BREAKS. (At least 10-15 minutes every hour, and at least 30 minutes every 2 hours.)

Plan for those breaks.

Have water and other liquids available.

Don't claim to be accessible, because you'll almost certainly miss something (so will everyone).

But you can be specific:
  • Fragrance free
  • No flash photography
  • Level access to all conference space
  • ASL interpretation
  • CART captioning
  • Contact X for further access requests
And you can include a statement that you are striving to be access-centered in your organizing so that all Deaf and Disabled community members can participate in every way.

Monday, October 7, 2019

It’s Time For Autism Research To Do Better By Autistic People

Photo: Charlene Croft | Creative Commons / Flickr
[image: hand of a person with light skin arranging long
red, green, and yellow construction blocks in a line.]
Shannon Des Roches Rosa

Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear.

I've been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already.

Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of "intervention," rather than focusing on quality of life, and largely neglects those like my son who have intellectual disability and/or communication disabilities.

My son is here now. I want autism research to focus on giving him the best life possible, not on trying to erase him, or change him into a non-autistic person.

What is behind this research disproportionality? Most organizations that pour money on autism research, such as Autism Speaks, The Simons Foundation, and The Autism Science Foundation, are neither autistic-led nor -informed, and frame autism as a problem to be eradicated rather than considering how autistic people and their families can live the best lives possible. As Autistic advocate John Marble commented,
“When it comes to funding autism research and supports in the United States, a few wealthy funders and foundations dictate the direction of funding priorities. Their priorities are not the priorities of most parents. It’s why only 6% of funding goes to researching how to help us [autistic people and families].
This skew is also why so people many were disgruntled over the recent reauthorization of The Autism CARES Act, which funds government autism research: With the exception of minor language changes, very little has changed since non-autistic autism lobbyists overrode autistic concerns and input about the Act in 2014. As autistic advocate Sara Luterman noted:
“The Autism CARES Act is a $3.1 billion funding package that gives exactly zero dollars to any autistic-led groups or initiatives.”
And even when research is promoted as helping autistic people, it largely does not do so in substantive ways. Consider recent findings about new autism genes. We talked with science writer Emily Willingham, who said,
“The most interesting finding here is the associations they found for people who have epilepsy. That represents a medical need for targeting. They found no variants in the vast majority of this population, and almost never found shared variants between autistic siblings. If anything, that reinforces the huge genetic variability underlying the development of autism, highlighting yet again that autism arises largely from a mosaic of variants operating in a background of other physiological influences that result in the continuum of features among autistic people.  
"In most human-related research, the goal is, one assumes, some benefit for the population being studied. With the exception of some homing in on epilepsy-related findings, I don't see how studies like this benefit autistic people or how they ultimately will. They confirm that autism, like other neurobiological variants, is highly individualistic, with each feature expressed at different points along a continuum in different combinations in different people. Perhaps that takeaway might be helpful in some indirect way by confirming that although autistic people share the features that make them autistic, how they express each of them is highly individual. Otherwise, I don't see much here that's helpful for the population that's in focus.“
A cynical person might say that the lopsidedness of autism research also happens because actually connecting with autistic people who have complex and diverse disabilities is challenging, and it’s much easier to do research that imparts the beneficent glow of working on behalf disabled people without actually engaging them.

That part of this imbalance has to end, and I’m not the only one who feels this way. In discussing my concerns with researcher Dr. Deb Karhson—who is also the sibling of a high-support autistic adult—she remarked,
“Anyone performing human-participatory research should be engaging in praxis to better address community-defined needs and to better understand themselves as allies or preferably, accomplices. Without praxis, we are acting upon people and communities instead of acting in solidarity and in congress with them.”
And yes, besides Dr. Karhson, there are many other truly wonderful autism researchers—many of whom are autistic themselves—doing useful and good work that will benefit the entire autistic community. We interview wonderful autism researchers all the time! But these in-touch researchers are the minority, and I cannot understand why so many other well-meaning researchers work so hard on behalf of theoretical autistic people or on early interventions, rather than on the pressing and under-addressed needs of that majority of existing autistic people who are no longer small children.

Can we please start putting our research energies into where they are most needed, which is in helping people like my son and his autistic get the supports and services and education and communication systems and adaptive gear they need to live the best lives possible? Can you imagine how frustrated my otherwise happy and content minimally-speaking son has been, spending his entire life without a proper communication channel to express his thoughts and interests because the research that would lead to real-world progress in addressing the diversity of autistic communication needs isn't fully developed? What if his issue is actually a motor planning disability, and he doesn’t have intellectual disability? What if he has both disabilities? How would we know? Research rarely addresses these issues in ways that translate to real world differences.

To make progress, we need to listen to what autistic people themselves have to say about the goals and direction of autism research. Every year at the meeting of the International Association for Autism Research (INSAR), autistic people and autism researchers (and many who are both) get together to discuss autism research priorities at the AutINSAR event. Topics include under-studied areas like co-occurring conditions, underserved populations, the trauma caused by normalization approaches like ABA, suicidality, autistic commonalities, and autistic inertia and how it manifests differently in different people. Yet these topics are rarely addressed. (And please note that no one in the AutINSAR discussions is ever interested in autism causation.)

If autism research is to change for the better, we need to give more attention to organizations dedicated to autistic well being, like AASPIRE (Academic Autism Spectrum Partnership in Research and Education), and Shaping Autism Research UK's Starter Pack for Participatory Autism Research (involving autistic people in studies). Other autism research organizations need to use these orgs as models.

Research indicates that autistic brains exhibit more diversity than non-autistic brains. If autism research is truly going to address the needs of such a varied population, then it needs to branch out similarly, get real about what autistic people need, and humanize its priorities.

Thursday, October 3, 2019

Autism and Self-Injury: Talking With Dr. Rachel Moseley at INSAR 2019

Dr. Rachel Moseley and Carol Greenburg
[image: Photos of two smiling white women wearing glasses posing together.
Left, Rachel Moseley has shoulder-length light brown hair.
Right, Carol Greenburg's hair is in a platinum bob.]
Content note: This interview discusses self-injury and suicidal behavior.

Oftentimes the most rewarding findings at INSAR, the annual meeting for the International Society for Autism Research, emerge during the pre-conference sessions. We went to the 2019 pre-conference on autism and mental health and were impressed by Dr. Rachel Moseley's presentation on self-injury in autistic people without intellectual disability—and are grateful that Dr. Moseley was able to make time to talk with TPGA editors Carol Greenburg and Shannon Rosa about her research.

Shannon Rosa: Dr. Moseley, can you first tell us a little bit about yourself, and your background and affiliations?

Dr. Moseley: I’m a researcher at Bournemouth University. I did all my studying and my PhD at Cambridge. In those days I was looking more at brain differences and differences in the autistic brain, and did quite a bit of research on brain connectivity and so forth. I’ve also done a bit of research on sex differences, and various things. [laugh] So I find myself now at Bournemouth University, and I’m more interested now in mental health, also physical health, suicide, and, as you say, self-injury.

Rosa: Why did you make a choice to study people without intellectual disability?

Dr. Moseley: I think, insofar as it relates to self-injury, autistic people without intellectual disability are underserved. They’re a very misunderstood group. If you were to do a literature search on self-injury, you’ll find a lot of studies and opinions on self-injury in people with intellectual disability, but there’s very little information out there about whether autistic people without intellectual disability also engage in self-injury, and whether it would be for the same reason for autistic people with intellectual disability, and whether it would look the same as in people in non-autistic groups.

There is one very good paper by Brenna Maddox, and it was the only paper that looked at self-injury in an autistic group without intellectual disability, and it felt like, there were a few things in the paper that I really wanted to know more about, and so I thought this really needed to be further looked into.

Rosa: Okay, thank you. Can you please tell us about your research sample and what your selection criteria were and why?

Dr. Moseley: Certainly. So, I approached the autistic community with quite an open recruitment strategy, really. I did my recruiting partly online, and partly through social media, and partly through the recruitment database of the autism research center. And so, I really let it be an open invitation, really, for any autistic person, male or female or nonbinary, anything, who self-injured or who didn’t self-injure. And the sample I ended up with in the end, interestingly, was predominantly more female participants than males, which is unusual for autism research.

Rosa: Why is that unusual for autism research?

Dr. Moseley: Well. There’s, there’s a very well-known gender bias in autism research, where studies tend to include more male participants. Men and boys are more likely to be diagnosed.

Something I think is a very interesting question is, this study was obviously pitched as one about mental health. And, in non-autistic people, I think there’s a bit more stigma for men around talking about mental health. So I wonder if autistic men are similarly subject to that stigma, and if so, that raises very worrying implications. Maybe autistic men are more vulnerable for not being able to come forward, and talk about these things.

Rosa: Can you tell us what the primary findings of your study were?

Dr. Moseley: Sure. I’ll try and summarize them. We were interested in finding out more about the features of self-injury in our group, and finding out how people felt about self-injury, and also finding out what kind of things predicted self injury.

In terms of features, we found—very much like the Maddox study I mentioned earlier—that autistic people without intellectual disability self-injure in ways very similar to non-autistic people, for similar motivations, similar methods, similar age of onset, and so forth. In terms of predicting self-injury, we found a lot of things but I can summarize them. The things that seem to set apart current self-harmers and historical self-harmers from people who have never self-harmed were things like alexithymia, which is a difficulty in identifying your emotions and also in describing them to others. So people who have self-harmed had a lot more difficulty with alexithymia than people who have never self-harmed.

Carol Greenburg: Interesting.

Dr. Moseley: They also tended to have higher levels of anxiety and depression, and also higher level of sensory sensitivity.

These things were all predictive of self-harm status. What we also looked at was perceptions of self-injury in autistic people, how people thought about their self-injury, and also the kind of things they thought were important to help people and they wanted other people to know. So, a few of the things that came across were that people highlighted the importance of patience, of empathy, of non-judgment from medical professionals, professionals, and also from family members—the need for support, love, caring, and passion.

And one of the things that was very interesting was a kind of dichotomy in data between some people who were very distressed by their self-injury. They expressed for instance, “no one wants to do it,” “it’s like an addiction, not a choice,” “it’s a sign of how unwell I was,” Whereas other people were very matter-of-fact and thoughtful about it. They said “it’s a means of expression, much like any creative or artistic outlook”—that is a quote.

One person said to me, “it’s almost a positive thing because it helps me get through things, and stabilize, and reach homeostatis, which was really interesting. They said, “I can either not do the stressful thing, or do the stressful thing and use self-injury as a means of getting back to baseline afterwards.

Another quote was “Sometimes I get so overwhelmed that I don’t know how I can get through a day, so I go, I do self-injury, and seeing the self-injury helps me calm down so I can calm down and then go on with my day.” So, some people talk about it in this very functional way, whereas others are very distressed. So it was very interesting, this dichotomy, and we’ve done a follow-up study, which is currently under review.

Greenburg: What factors made somebody okay with self-injury, as opposed to what factors made somebody completely dysregulated during self-injury? Did you find out why?

Dr. Moseley: A substantive question. I think there’s so much more to be looked into. People self-injure for very different reasons, and one of the things we were very curious about, in the follow-up study, is whether types of self-injury, whether certain reasons of self-injury are more dangerous than others. Because, you see, we wondered if people who see their self-injury as very functional, who thought of it as a tool, we wondered if that kind of self-injury wasn’t as related to suicidality as the people who were very distressed about it.

But that’s certainly not what we found. We found that regardless of how people think about self-injury, it was related to their suicide risk. But we also need to dig more into this, why some people get very distressed about their self-injury, why others don’t. I suspect it’s related to the reasons they engage in it. For instance, some people were engaging in self-injury as a means of regulating high-pressure emotions like frustration, anger, or agitation, whereas others were engaging in self-injury to regulate what we call low-pressure emotions, which are depression, numbness. These were what was happening when people were saying, “I self-harm to feel something,” and there’s some suggestion that that’s more related to suicidality.

So, people who are using self-harm as a means to break through depression, that’s a red flag. And certain methods of self-injury are also more related to suicidality than others in autistic group[s].

Rosa: So the next question was going to be whether there were any findings were surprising, but it sounds like that dichotomy was very surprising. Were other findings similarly unexpected?

Moseley: I think the one that was most eye-opening to me was that no matter how a person feels about their self-injury, even if they view it in a very methodical, matter-of-fact way, this preliminary analysis suggests that even if a person doesn’t mind about self-harming—even if they think about it as no problem whatsoever—it still doesn’t make any difference to what risk they are for suicide. Of course we need to go deeper, understand more, but this, to me, was very stark. And it’s consistent with theoretical models of suicide risk, where, basically, what self-injury does is makes a person capable of taking that next step through, through, ah, increased tolerance for pain, and…

Greenburg: …and making them less scared of death.

Moseley: …by self-injuring they therefore make themselves more capable of taking that next step. So no matter how they feel about their doing it, just self-injury may increase their capacity to suicide.

Rosa: Wow. That is. [Pause.] That is really…

Moseley: Frightening.

Rosa: That is really worrisome. Well. How has your study been received so far?

Moseley: It’s been really positively received, I think, though mostly by the autistic community. It took a long time to publish, so in the meantime I made video summaries of the findings, and was in quite close contact with the groups of people I recruited locally. People were really fascinated. One gentleman learnt a new word for something that he had been struggling with for so long, which was alexithymia [the inability to identify and describe one’s emotions].

Rosa: Oh, my goodness.

Moseley: He’s never known it was a condition. And just knowing about this was so enlightening for him. It helped him so much. It's been so rewarding for me to hear how positively our research been received by the autistic community.

Rosa: How would you like the findings of your study to affect the approach of autism and medical professionals, in terms of supporting autistic individuals in the real world?

Moseley: I think the study raises very worrying implications, as you’ve said. Originally, I was thinking that it might be very helpful for professionals to be able to see particular red flags, that if a person also has self-injury, that might mean, of all people who are self-harming, there may be some who are at particular risk and therefore should be helped.

Of course, the findings didn’t support that, so, in terms with where we go with it, it really suggests that no matter why someone is self-harming, we need to be very, very attentive to them. We need to help them. We need to give them support. Obviously we need to look into this more, because this is very preliminary analysis. And there are, like I said, there are certain types of self-injury that are more dangerous than others.

But, yeah, the findings really told us that we need to take it very seriously indeed. And if clinicians or professionals find out that someone is self-harming, they do need to be very attentive to it.

The other important thing that came out of this research was the voices that we heard: what self-injury means to autistic people, and what they think would be helpful for them. Because what really came across were assumptions made about self-injury, for instance that people had a personality disorder, or that they were attention seekers—those were very distressing to them. They found it was very difficult to communicate with therapists and doctors, because they weren’t getting that understanding.

One person said, “It’s as if you’re speaking a different understanding, and the two worlds don’t meet.” So these are really important things for doctors and clinicians to hear.

And just for family members and loved ones generally, there is a need to be empathetic, compassionate, nonjudgmental, calm. Don’t freak out, don’t get angry with them, don’t get emotional, because it really won’t help.

Rosa: Okay. Wow. So, what are your next steps now? You said that you already have another paper in the works?

Moseley: We do! We have another paper in the works, and we have a couple of ideas sort of pending on grant applications,

But we have some existing studies going on. One thing we’re looking at is measures of stress. We’re interested in whether lifetime stress and certain types of stress are especially associated with self-injury, whether other variables like uncertainty and intolerance of uncertainty play into the picture.

We're interested in other angles such as the impact of how a person moves from self-injury to suicidal acts, and just trying to build a bigger picture with stress, alexithymia, intolerance of uncertainty, so we can understand about self-injury and what moves people on to actual suicide attempts.

Rosa Well, thank you so much. Is there anything else you’d like to add, or you, Carol, would like to ask?

Greenburg: Yes. Is it making too many assumptions to wonder whether there’s a correlation with self-injurers and sensory-seeking tendencies?

Moseley: This is a really, a really interesting question and I can’t answer it at present because I haven’t done the analysis.

Greenburg: Is that something that might come up in future studies? It seems like a good follow-up.

Moseley: It could do; it sounds like you think that’s a very good avenue. You know, one thing I have to say—even though I can’t answer that—but I was very interested to see sensory sensitivity play such a role in self-injury as a predictor, and one of the things that came up in the follow-up study is that engaging in self-injury for certain reasons, such as to break though depression, was highly related to suicide, and engaging in self-injury for sensory stimulation was also highly related to suicidality. But this doesn’t quite speak with sensory sensitivity, maybe. We need to look into this more.

Sensory seeking, engaging in self-injury for the reason of sensation-seeking, may not sit with those people who are sensory sensitive. They may not be sensation seeking. So we need to delve into it further. But that is such an important angle.

Greenburg: Most autistics have some kind of depression simply as a result of living in a world that is not built for us. It’s not intrinsic, but it’s prevalent.

Moseley: You’re so right, and that is why it is not surprising that sensory sensitivity is higher in self-harmers, because, basically, sensory sensitivity affects whether an autistic person is a self-harmer or not. Those who have sensory sensitivity are much more likely to be a self-harmer.

Greenburg: Sensory avoiders or sensory seekers?

Moseley: Sensory sensitivity. So we measured several aspects of sensory experience. We measured sensory seeking, sensory avoidance, and sensory sensitivity. The difference between the last two, I think, is that people who score very high on sensory avoidance try to get away from sensory situations, people who are very high in sensory sensitivity may not necessarily try to get away, but they just just experience the sensory overload. People might be high in both of those those things, but the one that was related to self-injury was sensory sensitivity. Does that make sense?

Greenburg: Yeah. It makes sense.

Moseley: It’s scary; it’s all very stark.

And I feel with you. It’s such an important area that I am devoted to. I want to take it further. And I do feel so pleased to see mental health and suicidality and self-injury be so emphasized at this year’s INSAR. This is wonderful. I’m so pleased to talk.

Rosa: Yeah, me too.

Greenburg: Thank you.

Rosa: Yes, thank you Dr. Moseley. I’m so glad that you could be here.

Moseley: Can I say one last thing? Literally one last thing, because you asked me if I could say anything else, and it would just be my immense gratitude to my participants, without whom this could not have been possible, and how courageous it was for them to talk about such a personal thing. So that is just my last message.

Greenburg: Wonderful. Well, thank you, very, very much.

Moseley: Thank you.


Interview transcription by Sara Liss.