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 teachingunicorn.com

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.