Wednesday, July 31, 2019

Stop Claiming Autistic People Who Commit Sex Crimes "Don't Know Any Better"

Cropped photo of a shadow of two people, on grass. A foo t in a woman's black flat shoe is visible on the lower right.
Photo © Jan Olof Nygren | Creative Commons
[image: Cropped photo of a shadow of two people, on grass.
A foo t in a woman's black flat shoe is visible on the lower right.]

Zack Budryk

twitter/@BudrykZack

A show that ran as long as Law And Order is, naturally, going to have some off days. I’ll admit to occasionally tuning into the show’s seemingly never-ending basic cable blocks as a guilty pleasure. One of the telltale signs you’re about to watch one of the shitty ones is when the culprit is apprehended about 20 minutes in. When it’s taken care of that early, you know the trial portion of the episode is going to revolve around the perpetrator’s lawyer arguing that their client killing people is a medical condition or something similarly absurd. So you can imagine how irritated I was, to say the least, when someone decided to pull the same trick  in real life.

The Internet is vast and contains multitudes If, for some reason, you want to identify the absolute worst people on here, there are several ways you could go. There are the neo-Nazis of course, but there are also the mass-shooting truthers, the guys who call everything “free speech” and of course, whoever wrote this.

But a top contender is the “pickup artist” community, a blanket term for various oily sleazes who purport to teach men to score through tactics aimed not at genuinely being more appealing to women, but at manipulating them or wearing down their resistance. As you might imagine, obtaining consent is often neither here nor there for these people, and some of the subculture’s most famous faces, such as sex tourist Roosh Valizadeh, are admitted rapists.

Which brings us to Jason Berlin. Berlin was sentenced to prison for participating in the rape of an inebriated woman in 2013. At the time of his crime, he was paying for seminars that claimed to train men in pickup artistry, or “game,” in their parlance. Last week, Berlin’s lawyer argued in a sentence-reduction hearing that Berlin had recently been diagnosed with an autism spectrum disorder and as such was not aware raping women was wrong. It’s difficult to know where to begin with something this obscene and absurd. It brings to mind theoretical physicist Wolfgang Pauli’s reaction to a poorly written paper: “That is not only not right, it is not even wrong.” Berlin’s defense claimed he was manipulated by his co-defendants, Alex Smith and Jonas Dick, and that he had the “social and emotional capacity of a 5-year-old,” according to the Daily Beast.

As an autistic man who’s been married for five years and in a relationship for nearly a decade, I have a front-row seat to the ways this argument is bullshit. First of all, while autistic people are in fact susceptible to manipulation from neurotypical people, we also have strong senses of right and wrong. This is especially true when we’re younger. For example, when I was in fourth grade I printed up a broadsheet about how my classmates were sliding into juvenile delinquency by saying things “sucked” because my parents had forbidden me to say it.

Berlin, autistic or not, actively boasted about the incident and blogged about his goal of having sex with 15 women over a three-month period. The defense’s implication that simply having autism made Berlin an incompetent child is difficult to square with the $2,000/month apartment Berlin rented for himself and his partners. Paying rent and maintaining an apartment are relatively complex life skills. Local coverage of the trial noted that while Berlin was unemotional in his apology, he “cried openly when his mother turned and faced the victim and apologized to her.” I realize our understanding of autism is constantly evolving, but what’s described here sounds less like autism and more like “not actually being sorry.”

This argument is offensive because it plays into the stereotype that autistic people as exclusively white men who have problems relating to women. This ignores the fact that not only do autistic women, exist, but they too are susceptible to manipulation and are at high risk of sexual abuse as a result. By treating autism as some kind of brain parasite that removes men’s capacity to know rape is wrong, Berlin and his defense have reinforced those stereotypes and actively made these women’s lives harder.

Like a lot of people on the autism spectrum, I struggled with modern dating rituals until I found a partner who clicked. It’s true that dating is an environment that can be particularly fraught for autistic people. But—and I didn’t expect to have to clarify this, yet here we are—there’s a difference between “getting a date is confusing” and “I don’t know not to have sex with someone without their permission.” In trying to blur these lines, Berlin is infantilizing himself and all autistic people and playing into misconceptions that allow non-autistic people, often with ill intent, to step in and presume to speak for us. It also plays into the insidious, well-established tradition of connecting violent crime with autism as in the cases of Sandy Hook shooter Adam Lanza, misogynistic spree killer Elliot Rodger, and, not a week after he murdered 58 people in Las Vegas, Stephen Paddock.

A spotlight is currently shining on just how easy it is to prey on women in our society in general. To blame what Berlin did on autism is not only ableist and scientifically unsound, it ignores our disturbing tolerance for this kind of behavior. Something makes men like Berlin decide not that what they do is wrong, necessarily, but that the wrongness of what they do is irrelevant. If we focus on autism, rather than whatever that thought process, is, we won’t do anything to prevent future Jason Berlins. All we’ll do is continue to stigmatize autistic people.

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This article was previously published at NOS Magazine.

Thursday, July 11, 2019

Being Hyper-Verbal Is A Real—And Disabling—Autistic Experience

Two Vietnamese men, seen from behind, wearing billed caps and squatting as they have a conversation. The man on the right is gesticulating with his left hand
Photo © ePi.Longo | Flickr / Creative Commons
[image: Two Vietnamese men, seen from behind, wearing billed caps and squatting as
they have a conversation. The man on the right is gesticulating with his left hand.]

M. Kelter
www.TheInvisibleStrings.com

Content note: This article discusses suicide risk factors specific to the autistic experience.

I worry that too many people think of hyper-verbal autistic speech as being synonymous with "articulate" or "fast" or as something purely beneficial. This is actually not correct. Hyper-verbal autism is autism, and it is a disability. I want to provide a few details about how it generally works, so that I can draw a line connecting it to what people generally think of, when they think of autism.

I am on the spectrum, and I was fortunate enough to spend a few years working with a specialist who taught me the parameters of my particular way of engaging with language. We found that my verbal processing tends to create difficulties for me when it connects up with three factors: Emotional volume, thought speed, and social pragmatics.

What I am going to describe here is the way hyper-verbal speech works for myself—one, non -representative individual—and the way that these factors are exactly what you would expect to find in the realm of autism.

Some who have children with significant degrees of intellectual disability feel like conversations like this can obscure what they call "real" autism. But this, too, is incorrect. The distinction they are making only manages to cut the common thread that connects varied autistic experiences into a coherent neurological profile.

To explain what I mean by that: there simply is no reason to see different experiences with autism as mutually exclusive, as if they are in competition for territory. Autism is a disability that impacts communication. And because there is predominantly a genetic basis—there are currently 102 genes associated with ASD—you would actually expect for people on the spectrum to be very different from one another. The genetic complexity means that people are taking many different neurological pathways into an autistic profile.

The unifying component of autism is communication, not the many individualized forms communication can take. If you focus only on differences at the expression side of autism—whether someone is verbal or non-verbal—you are going to skip over that essential shared ground. Variations are not invalidating of a diagnosis, they are what you would expect to find in a condition this genetically heterogeneous.

So, that's how the different types of autistic communication link up, but I do want to go into some detail about accelerated language since it is one of the ways that autistic communication happens.

Take that word "accelerated" and think of hyper-verbal speech as an accelerant or a fuel, something combustible that can turn volatile when mixed with the wrong variables (like fire, for example). Then take that accelerant and throw it on a mood.

When words are naturally assembled in such a way that they bring a detailed, granular focus to an experience, it can become quite destabilizing if that experience is an emotion. The words take the volume of a mood and turn them to a much higher level.

Hyper-verbal autism is no joke. It is not an affectation. When anger or depression or self-hatred gets a boost from this kind of added intensity, it can be very difficult to steer in a better direction. The interplay between mood volume and hyper-verbal speech is under-discussed and under-appreciated as a risk factor for suicide in autistic people. Please believe me when I tell you this.

These concerns include risks for children, as well as teens and adults. If you are a parent and you do not believe me when I say this kind of speech can be extraordinarily difficult to manage, ask another parent of a hyper-verbal autistic child. I am quite confident that they will tell you, at least in many cases, that the internal fights these children go through as they battle with their own words; it can be a terribly difficult situation.

If we are thinking of words as a kind of fuel, thoughts are what drive the vehicle. The speed with which words can form and race to new and varied patterns can make concentration a daily, hourly nightmare. I am rarely able to concentrate. Simple tasks are not simple. Every possible thought is instantly ten alternate thoughts that quickly grow to a hundred and then more and when you take that head space into a grocery store or a school test or a job interview, most of every day can feel like an incredibly frustrating obstacle course.

That's internally. Externally, people interpret your concentration issues a lot of way. It can scan as not paying attention, as rude, as flighty, as indifferent, as lacking empathy (because you're too overwhelmed to notice subtle emotions and people, not understanding autism, feel neglected and inadvertently spread myths about empathy) and so on. The concentration issue alone can lead to significant degrees of impact and disability when it comes to daily functioning.

Take the mood thing, the thought thing and imagine how they play out in the middle of a real-time social interaction. It can be extremely disruptive. The impact of this kind of autistic speech can be significant and—due to the hostile reactions it receives from the rest of the word—it can easily lead to depression and social isolation.

Via front-line observation, I can report to you that in social contexts, hyper-verbal autistic speech functions like a chain event. As a child, I had social needs, I liked approaching other kids and sharing my thoughts, but that's now how interactions work. You have to know the social codes and hidden social rituals, and my words blew past all of that like a boulder going downhill. I would approach kids and start talking out of my head in a deluge of monologue, and that only ever drove kids away, or elicited bullying (aka violence). Mood disorders and social isolation ensued. It was a chain event.

To be clear, the answer back then would not have simply been to have me talk less. People tried that, but it didn't take because that's not how autism works. The answer would have had a lot more to do with changing the way people react to autistic differences, but we can take that up in another post.

If you are someone who generally believes that hyper-verbal autistics are arrogant, or have it easy, or that they do not have "real" autism: please know that you do not understand what autism is, and you are not helping autism conversations. What you are doing is are disparaging a group that doesn't need more disparagement. My only hope is that you can sense that I am trying to share good information with you here, and that you do not need to shout at autistics on twitter because they said a thing.

I honestly believe people will have an easier time understanding the autism spectrum the instant they stop creating nonsensical barriers between autistic people and their lived experience, and the ways that they engage with communication. New school, 2019 autism is simply a better conversation to have. I did not like the old one.

Thursday, June 27, 2019

The Kelsey Honors the 20th Anniversary of Olmstead

wheelchair, and a bipap mask; a white man with brown hair in an undercut and a mustache & beard; and a Black man with very short gray hair.
Alice Wong, John Marble, and Leroy Moore
[image: Stylized photo of an Asian-American woman with bobbed black
hair, a motorized wheelchair, and a bipap mask;
a white man with brown hair in an undercut and a mustache & beard;
and a Black man with very short gray hair.] 
There are few better ways to spend the evening than at an event for inclusive housing initiative The Kelsey, in celebration of the 20th anniversary of the Olmstead decision—"the most important civil rights decision for people with disabilities in our country's history"—with an amazing panel of disability advocates: Alice Wong, John Marble, Leroy Moore, and Micaela Connery. We were lucky enough to do just that last night, and now we'll share what we learned with in this lightly edited transcript of our live-tweeted coverage of the event. 

Listening to Alice Wong of Disability Visibility Project talk (with a dash of salt) about why needing supports doesn’t negate innate independence & autonomy. And how public funding of supports keeps PWD like her in the community, & out of institutions. Even when it’s not easy—& she still feels vulnerable.

The annual redetermination process is laced with anxiety for people who depend on it. And it is a poverty trap! She can’t earn more than $2K (which is less than 2.5x the poverty level) without losing benefits. So she has to pass on paying opportunities all the time.

This is not in keeping with the spirit of the Olmstead decision, e.g., a lot of disabled people do not have the freedom to move between states, because anchored to state-specific benefits.

And community based services (HCBS) look very different state-to-state (though there’s never a barrier to institutionalization!). And most states still enable sub-minimum wage for PWD, which keeps the poverty trap cycling hard.

Did you know: People who depend on SSI often can’t get married, because that means their benefits will be reduced? There is no marriage equality for many disabled people.

Recently, a high-profile story of Anna Landre, a Georgetown student who had their support hours reduced resulted in those hours being reinstated. But how many other PWD have support hours arbitrarily reduced without any recourse or resolution?

There are also social and physical barriers to PWD taking part in their legal right to voting, e.g., every SINGLE US presidential candidate’s website is inaccessible to Blind people. IN 2019. #CripTheVote

Every disabled person can have the life they want!

John Marble is feeling a bit abashed in having to follow Alice, which is totally understandable.

John is the founder of Pivot Diversity. Talking about how even though he’s never been institutionalized, he’s always had a fear of institutionalization. Which, turns out, is not actually that irrational, because most autistic people his age & slightly older WERE.

Example: Darryl Hannah was diagnosed #autistic as a child, but was able to evade institutionalization because her mom was able to homeschool her until she was ready to attend school with her peers.

John says that he always feels like he is one step away from losing everything because he’s autistic—and in talking with other autistics, he’s not alone. It is a stark fear, shared with many autistics.

The number of disabled people killed by police, especially PoC, is a bracing reminder of how far we have to go even 20 years after Olmstead and the ADA.

So John does not want Institutionalization to be the path for the future. At the very basic level, PWD have the right to live in the community. Not just reside. LIVE.,

John is now throwing shade on people who use “the voice” when talking to autistic people.

He wants other autistic people to have the right to be DULL and BORING. Per James Baldwin on the bizarreness of perceiving difference as bizarre.

PWD, autistic, and neurodivergent people deserve to be integrated into society and as normal as anyone else!

Now Micaela Connery of The Kelsey is talking about the 20th anniversary of Olmstead, and how everyone always assumed her cousin Kelsey, who was a disabled person with high support needs, should be institutionalized—and how it was a life-long fight for her entire family to keep her in the community.

If you read the fine print behind the ableist parts of Olmstead: No matter how high a person’s support needs are, they have the RIGHT to live in their own damn community. (I may be paraphrasing.)

Living in the community doesn’t look the same for everyone! Whether in the general community, living, employment, school—but the baseline is the same. Everyone belongs.

Even when institutions are surrounded by rolling green hills and aesthetically pleasing environments, when people have no control over their schedule and autonomy, those differences really don’t matter. Institutions sap their residents’ souls.

Now: Leroy Moore of Krip Hop Nation. He used to live in San Francisco, but he got gentrified out.

Poor Magazine has been fighting against institutionalization/eviction of poor people and elders. Sometime successfully, but sometimes landlords blocked. And elders died from the stress.

Under former mayor Willie Brown, San Francisco wanted to get rid of all the public benches. This is trend that’s spread all over the country.

Under Obama, public housing was eroded in every major city. And people with disabilities (PWD) depend on public housing. So how are PWD supposed to get out of institutions if there’s no place for them to go?

Under Housing Secretary Ben Carson, increasing amounts of public housing are coming under non-profit and private companies’ control. So PWD and others who used to live in those communities can’t move back.

One time, Leroy was stuck on the third floor of his building for an entire month because the elevator was out of order. The lawsuit is still pending.

Under former California Governor Jerry Brown, the conservatorship laws undermined access to SSI and independence for many PWD.

Anti-poverty and anti-disability laws are making things harder all over the country. We have people taking housing away from elders because their places are “messy.” What can we do? Poor Magazine has been on the forefront of this issue.

We need funding for public housing and related disability programs so PWD can stay where they live and live where they want to.

Right now, Poor Magazine is working on building housing in East Oakland.

There is basically no low-income housing any more. Leroy Moore feels like he’s hanging on by a thread, and he’s not alone. When the current president pushed to exterminate housing programs, the only person who came out against it was Rep. Maxine Waters.

And it’s not just housing. IDEA, funding for special education, has NEVER been fully Federally funded. People with disabilities of all ages remain under attack in the US.

Leroy Moore has been to the disability caucuses at DNC conventions—and there was no one there. NOBODY. Just a video of FDR. That tells you how much politicians value PWD.

We need to destroy conservatorship law, as it goes against Olmstead.

The one in-need housing population that is really growing is disabled elders. This is a violation of civil rights, and we need to do better.

The floor is now being opened to questions.

Q for Alice Wong on the intersection of disability/Asian people/women. Though she doesn’t have five hours to do properly address the issue, here's the short version: she consistently sees that disability leadership is… white. This has to do with who gets amplified. Which gets in the way of Asian/other POC identifying as disabled.

Disability activism needs to be more welcoming. Alice is wary of being tokenized. She wants to be valued for all of her amazing talents! There are a lot of people who share her identities out there. She wants them to be visible too.

“Fuck the model minority myth!” Alice got a D in trigonometry! The stereotypes of Asian-Americans as model citizens and students and coming from wealth is damaging, and limits Asian PWD from getting mental health and disability supports/community.

Audience member who is Autistic and Black talking about how he was running for a BART train because he was late, then got detained by the transit police because he fit the description of a perpetrator. It was really distressing.

John Marble was asked by a local newspaper about a story on autism and restaurants. And he really didn’t want to be the token white male autistic; he insisted on having an intersectional grouping of autistics.

He ways we have to change the narrative that we project and make it more inclusive. Starting with having autistic people on the boards and staff of autism orgs because most of them (MOST) really do not include autistic people at all.

Alice: EVERY issue is a disability issue, e.g., mass incarceration. And prisons are just another form of institutions/warehousing. There is so much trauma that is created and compounded in those environments.

Immigration is another huge intersectional disability issue, e.g., family separation and the trauma that it creates. Not to mention that PWD are having all of their disability supports (like crutches and other devices) removed as standard procedures. We need more solidarity.

Disability rights are civil rights are human rights.

Leroy Moore: Moses had a disability. So PWD have always been here. The problem is that people are just not doing their homework.

Also, reports of police brutally about PWD/people of color are generally not done by or informed by PWD/people of color. We need community-informed resources.

Leroy Moore: Poor Magazine has a workshop called “Never Call The Cops.” These are the kinds of resources disabled people of color need, these resources save lives. This is what the community needs, NOT more police training.

Elders are dying on the streets. PWD make up a huge proportion of homeless people. He’s been to cities in FL where people were kept in cages on the SIDEWALK. We need to think outside the box.

If you want disability justice, go to Sins Invalid.

Micaela Connery: Disability is a lens that is too often missing from formal social justice and housing policy work, even when race and SES lenses are applied. This needs to change.

Alice Wong: if allies want to think of themselves as co-conspirators, they need to support the orgs that are already doing the work, like HEARD and the Autistic Self Advocacy Network (I missed the first org noted, so sorry). Props to ASAN Director Julia Bascom, and see their Resource Library.

John Marble: Autistic and disabled people are the experts in their own lives! Imagine what could happen if even 1% of the money splashed all over autism causes and orgs was given to the autistic people who know what to do with it to change autistic lives for the better?

John recently took on Fiona Ma for spewing ableist crap all over the disability caucus at a Democratic convention.

John desperately wants radical young autistics to show him where he needs to push the political envelope! What is he missing?

Alice is giving props to #ActuallyAutistic Greta Thunberg and her lack of f***ks when it comes to doing what is right for the planet and humanity’s future.

She is also out of patience with gatekeepers who are getting in the way of disability and civil rights justice. We need better leaders.

Leroy: we need a change in the status quo! We need to support politicians like @RepMaxineWaters who actually do push back and do the right thing. Even when it hurts.

Micaela to Alice: what does good ally ship/co-conspiratorship look like?

Alice: Acknowledge what you don’t know! Find out more about what ableism is, in terms of everyday experiences and also systemically. Read up. Follow these panelists right here.

  …and provide material support. Show up to events. Buy the books and CDs. Connect with actual disabled people. Immerse yourself. Alice loves the people and the culture in the Disability movement and she thinks you will too.

Leroy: Krip Hop Nation is having a Disabled African Musicians tour in July! Support it.

Over and out! Thanks everyone.

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Additional Event Coverage and Links: 

Alice Wong: The Olmstead Decision & Me
The Kelsey: Reflecting on Olmstead Panels

Tuesday, June 18, 2019

Dangerous Assumptions

proud parents
Photo © Lucy Downey | Flickr / Creative Commons
[image: Two Canada geese swimming with a fluffy baby gosling.]

Julia Bascom
juststimming.wordpress.com

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk… they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

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Originally published at juststimming.wordpress.com. Sincere thanks to Julia for allowing us to share it here.

Friday, June 7, 2019

How Being a Minority (of Mixed Race) on the Autistic Spectrum Shaped My Life

Emanuel Frowner
www.instagram.com/emanuelfrowner

Emanuel Frowner (photo courtesy the author)
[image: A smiling mixed race man with short black
hair in a natural style, and a mustache. he is wearing a
collared orange-and-blue Knicks pullover.]
I grew up mostly in the Bronx with my dad and my grandmother, and I still live there. The neighborhood was dangerous during my childhood because of fighting and drugs—a few people were killed. Therefore, I could not go out alone (until I was 17) and my folks were very protective of me. I would see my mom on the weekends. Sometimes, I would hang out with my siblings (with my folks). They had a different mom than I did, but we had the same dad and grandmother. Even though my grandmother looked very white, she called herself black, but my dad did not agree with her on that. My mom called herself black as well.

I was very quiet, and I would stutter sometimes.  My grandmother told me that this was because I think faster than I talk. She also told me that a still tongue keeps a wise head. I took these as compliments.

I went to an elementary school right near where I lived. At first, I did some mischievous things like breaking forks. During a test, I bubbled in all of the choices and the kids started saying that I was all wrong. The teacher erased them. My grandmother found out about this and she was not happy. At that point, I started doing a lot better and I began getting good grades on my report card. I kept working hard and with the help of my folks, I was named student of the month. This was an honor for me and it made me feel proud.

This did not prevent me from being bullied by other students and teachers just because I was different, which led to my dad homeschooling me from the 6th grade until I got my GED in 2000.  Being homeschooled helped me excel academically. It also helped me develop a strong work ethic, and it helped me to think outside the box.

Another reason my dad homeschooled me was because he did not want me to be fed nonsense. My dad did not want me to get a diagnosis that would put me in a box, or have a label so others could categorize me. He also did not want my brilliance and sensitivity to be overlooked, or want me to be marginalized to the point where it would do irreparable damage. This was a culturally specific issue (which is described later in this essay) as well as a generational issue; my folks stressed that getting an education was the most important thing. And my dad also did not want me to be apart of the herd mentality; he wanted me to develop along my own lines. He took me to his job to meet his coworkers and we all would hang out sometimes. It was okay for a while, but I would have liked to been around others who were similar to me.

Technology really came into my life when I was in my late teens. I began emailing and texting, and no longer had to rely on talking when communicating with others: I could take my time, and respond at my own pace. This also helped me have more privacy, and over time I began making my own decisions.

Before I knew I was autistic, quite a few people told me that I was very bright person who was just quiet and shy—even though I had particular interests like dates, sports stats, being punctual and being patient, yet did not have a few social nuances that others had. This may be because, being mixed race and from a minority culture (I am part Caucasian, part African American, some Native American, some German and a little Scottish, just to name a few), I found that talking about psychological subjects like autism is overlooked and is often talked about in a bad way. Also, I hardly received the type of support or empathy I needed when I was struggling. For example, when I stuttered a bit, I was told that I was hesitating. Another example is when I chose Psychology as my major in the summer 2004, one of my relatives was not supportive of this. But it made me even more determined to do well and I got my BA in Psychology from St. John’s.

In 2005, I started hanging out with my oldest brother Blair, who lived in Canada. He knew an autistic lady, started reading about ASD, and began telling me that I might be autistic. He did some research online and found the Seaver Autism Center at Mt Sinai for me. I did interviews and tests there, and the doctor told me that I was on the autistic spectrum. I was a little surprised, but it was a blessing in disguise.

I began reading up on autism. Two years later When I told my dad what the doctor said about me, he was surprised, but then he came to accept it. I joined some support groups over the years and made a few friends. In 2009, a lady, Katrina R. from Job Path, helped me obtain two jobs through customized employment. I have had those jobs for eight and a half years.

Today, I still work, and also do some speaking gigs. I am also a die-hard Knicks fan, and have been for years. In the future, I would like to do even more public speaking and I would like to run workshops relating to autism. I would like to write a book about my life story and I would like to write more articles on topics relating to autism. I would like to one day run an autistic group designed for minorities. I would definitely like to do more acting in order to improve my skills.

Thursday, May 30, 2019

Behaviour Analysis, The Autistic Way

Ann Memmott PGC
annsautism.blogspot.com

Autistic children endure a lot of ‘behaviour analysis,’ usually done by non-autistic people who are not trained to interpret autistic behaviour and motivation. Often they are taught to assume that the motivation is the same as that of non-autistic children. Thus, if a child gets out of their seat, they are taught that perhaps they are avoiding working and need to be incentivised to sit down and concentrate. Or perhaps that they are attention-seeking and need to be ignored. There’s entire years of courses designed around such theories.

Autistic children aren’t the same as non-autistic children, though. Their reasons for behaving in a particular way are often different, because their brains are designed to work differently. I see too many books and training courses where teachers are told that autistic communication & social skills are faulty, that autistic children are usually to blame and need altering. New research shows clearly that this isn't so, as I talk about on my blog. Autistic people use a genuinely different way of socialising and collaborating, and can often communicate and collaborate well together. But, the difficulties arise when an autistic and a non-autistic person try to understand one another.

Let's say we have a five year old autistic girl, Sam. Sam is asked to sit still on the floor at school during 'circle time.' Sam does not sit still. Sam gets up and wanders round. What's potentially happening here?

Firstly, let's look at how the classroom may appear to Sam. Not all autistic children will see this exact effect, when in noisy, busy, fluorescent-lit spaces. Some do. In this, perhaps the teacher becomes invisible in the sensory chaos.

Photo courtesy Ann Memmott
[image: Overexposed photo of a busy, cluttered classroom.]
Secondly, Sam may be able to hear people talking across the entire school. Next door, moving in the hallways, chairs scraping, bells sounding, planes overhead, clocks ticking. It is a deafening, bewildering experience for those whose hearing is designed to detect oncoming danger, and so who listens to everything, everywhere, all the time. Often, the teacher becomes impossible to hear. That’s a reality of autistic hearing, for many.

Thirdly, Sam may find sitting on a hard floor intensely painful, and doing so becomes torture. Autistic sensory differences may mean things tolerable for others are beyond our ability to cope.

Fourthly, Sam may have Restless Leg Syndrome (“RLS”). Some autistic people do. Researchers suspect it is due to a chemical imbalance that causes intense feelings of rising uncomfortableness, often in the legs. Usually the only quick way to stop the torment of it is to move sometimes. Look it up.

Fifthly, Sam may have a form of Ehlers Danlos Syndrome (EDS). Some autistic people do. It can lead to joint problems, pain, exhaustion, and extreme difficulty sitting unsupported. None of that is deliberate avoidance or attention seeking. Nor is it slumping in a chair because of a poor attitude.

Sixthly, does Sam also have ADHD? There’s a big overlap between autism and ADHD, and sometimes the ADHD is missed. Sitting and concentrating for a long time can be almost impossible for some, therefore, and breaks desperately need to be taken.

Seventhly, Sam may encounter what some autistic people may experience when in sensory hellish places or during too much social interaction—unusual brain activity. Not a full epileptic seizure, but 'spikes' in electricity in the brain, which can lead to unusual responses for a while. Those are entirely out of the individual’s control. It may lead to them ‘shutting down’ or ‘melting down,’ the former being a switch-off response where they cannot communicate. The latter resembling a temper tantrum, but it is not. Neither response can be ‘behaviour-trained’ out of them, as it is not a chosen behaviour.

Possible Reason eight, Sam may find that being jostled leads to intense pain, for example in circle time if the children are very close. An unexpected jostling can feel like being electrocuted. Sam may wish desperately to put space between themselves and potential pain etc, and may need a much bigger personal space zone.

Some autistic children flap their arms or shake their fingers in front of their eyes, for example. Finding our bodies is really hard, because we don’t have a good bodymap in our brains, so this helps locate which bit of us is where. Or it may be a way to regulate what we’re doing and feeling. Or it may be a way to understand how far away we are from other things. Making it stop is somewhat like stopping a Deaf child using sign language, but worse. Yet, I see ‘extinguishing repetitive behaviour’ on so many behaviour plans for the children. Some repetitive movement may be around RLS and EDS also (see above).

There’s another reason why Sam may be patrolling the outskirts of the group. We’re generally better at detecting oncoming danger. In villages and tribes, autistic people would have the hearing range and eyesight-detail that might enable them to be the very first to hear an oncoming predator. The very first to smell approaching smoke. Being on the outskirts, watching, listening, is potentially how a lot of communities survived. A village would benefit from such a lookout person, not distracted by social chatting and looking at the eyes of other people. That patrolling behaviour could be a perfectly natural autistic instinct, therefore. In class, it’s a behaviour that may need clarification that they can relax, that all is OK, that they can return to their place because there are alarms, sensors, and staff already taking care of that detecting. Number of behaviour manuals I’ve ever read this in? None at all.

A further possible reason for behaviour is around trauma. Too many autistic children are victims of traumatic experiences at the hands of some others, and go on to show clear symptoms of PTSD. Escape responses or other trauma responses are not then ‘being naughty.’ They are from a place of terror. Behaviour plans take little or no notice of this possibility, in my experience.

All autistic behaviour has always been thought of as faulty, until recent research has helped us understand its wider purpose.

So, what can we do to potentially help Sam to hear, see, relax, and not be in pain? Let's think.

First, Sam’s medical team may wish to do some autism-friendlier testing for those medical possibilities of RLS, EDS or epileptiform ‘brain spiking.’ It may be worth someone doing an investigation for ADHD, too, and a general medical checkup for any other pain condition or illness. Many autistic children do not register pain and illness in the usual ways, and so may not be able to explain these. Mindful of our own son, who played sport with a broken foot for some weeks, not registering the pain he was in. Thus, medical teams thought it was just bruised.

Can Sam's class not have fluorescent lights or blinding spotlights? Can they be switched off if it’s bright enough outside? Can Sam have sunglasses perhaps, or a baseball cap to cut out glare? Can Sam trial noise cancelling headphones perhaps? Can Sam be allowed to sit on a comfy chair, to avoid collisions and to enable better support and less sensory pain? Can Sam have regular scheduled short breaks and a signalling system to say they need this? Can electrical equipment in the class (overhead projector, computers) be switched off to minimise noise? Can rooms be carpeted, if budget allows?

Can people please Ask Sam What Would Help. Capitalised, because strangely enough so many never think to do this. Whilst some autistic children do not use spoken language, all can communicate. Sometimes the behaviour is the communication. See below for involving autistic expertise in translating, if needs be.

Personally, I want to congratulate Sam for being in that class at all, and engaging in any way, given the obstacles. I start from thinking, "How fantastic to be in a class with Sam. This is my learning opportunity. What behaviour and attitudes of mine can I change?”

Certainly I'd want to bring in autistic specialists. That’s different from autism specialists. Autistic specialists are professionals who are autistic, and are able to interpret and decode autistic communication and behaviour. They can interpret autistic communication, and note any sensory difficulties that non-autistic brains may miss. Quite easy to find these days.

I'd want to affirm and support Sam, enabling them to be their best autistic selves.

Like any child, Sam may well try to get out of activities just because there's something more fun or less work. But that's not my 'go to' for autism. Generally autistic children want to learn and want to follow rules. If that has gone wrong, we need to think way beyond the toolkit for decoding non-autistic children, which is the one so often used.

Our autistic children are doing their best to survive in schools. We need to move beyond the old mantras and myths around reasons-for-behaviour, and into a present and future where we understand deeply and work collaboratively. Then, we have better experiences and outcomes for everyone.

Thank you for reading.

Tuesday, May 28, 2019

The Problem With Autistic Communication Is Non-Autistic People: A Conversation With Dr. Catherine Crompton

Dr. Catherine Crompton is doing ground-breaking research on autistic social dynamics and communication, so we were thrilled to interview Dr. Crompton about her work on Information Transfer between Autistic and Neurotypical People during INSAR 2019. We were fascinated (and gratified) to learn about her findings that when there are communication disconnects between the two groups, it tends to be a mutual hiccup rather than an autistic-specific problem.

Shannon Rosa of Thinking Person's Guide to Autism (TPGA): I’m speaking with Dr. Catherine Crompton from the University of Edinburgh. Catherine is working on a project that examines whether performance on cultural transmission tasks varies, depending on the diagnostic status of the social partner, which basically, if you want to summarize that in layman’s terms?

Dr. Crompton: It means that we’re looking at how autistic people interact with other people, whether that is different, depending on whether the person they’re interacting with is also autistic or whether they’re neurotypical.

TPGA: Thanks so much. So can you please tell us a little bit about yourself, about your background and your affiliations?


Shannon Rosa and Dr. Catherine Crompton at INSAR 2019
[image: Two white women posing together, one with red chin-
length hair and glasses, the other with long brown hair and bangs.]

Dr. Crompton: Sure, currently I’m a postdoctoral researcher at the Patrick Wild Centre at the University of Edinburgh and before that I did my undergraduate degree in psychology. Before that, I worked at an outreach service for autistic adults that did a lot of community-based stuff with people who were doing lots of different things, and who wanted support for various different bits and bobs in their life. I did that for a few years and then I went and did my Ph.D in aging. My Ph.D wasn’t in autism, but now I’ve come back to doing autism stuff in the project that I’m doing now.

TPGA: Why did you choose to study the efficiency of how autistic and non-autistic people exchange information?

Dr. Crompton: There are two reasons why this project came about. Firstly, we’ve had a huge amount of first-person accounts and anecdotal evidence that autistic people can find spending time with other autistic people more comfortable and easier and less stressful, and just easier than interacting with non-autistic people. We’ve heard a lot from people who have said, “once I found more autistic people I thought I had found my community” and this kind of stuff. And we didn’t have any empirical evidence to back that at all.

We’ve got a theoretical framework within the double empathy problem which kind of says a similar thing, in that the problems of interacting and interactions between autistic and neurotypical people isn’t necessarily all down to a deficit on the part of the autistic person. It’s more to do with a mismatch in communication style, and mismatch in background.

There is now a growing body of evidence that’s looking at double empathy problem matters, but when we started this project we were really keen to try to address these two areas in an empirical and data-driven way, to see whether this is something that we could explore scientifically in a controlled fashion. We were really interested to see if our theories would stand up to empirical tests.

TPGA: Got it. Can you please tell us about your research sample. What were your selection criteria and why?

Dr. Crompton: For everyone that was involved, we asked that they were over 18 years of age. We didn’t put an older age limit on it because we didn’t want to be overly restrictive. There was no reason for us to be, so we just asked that everyone was over 18; and within our autistic group we said that people could either be clinically diagnosed or self-identified as being autistic. We didn’t want to exclude anyone from taking part who felt that they were part of the autistic community, and had that lived experience. We did use measures with everyone who came in. So even if people were self-diagnosed we asked them to do a couple of screening measures, made sure that they were within the area that we would expect them to be.

We matched our groups on age and gender and IQ and years of education, and things like that. So all the factors we might expect to have potentially an effect on sharing information, or on learning a new task, we just made sure our groups were matched on those things. We also made sure that all our participants were native English speakers, or spoke English to a native-level.

The only other thing that we used as an exclusion criteria is social anxiety disorder. I think it would have been fairly self-selecting anyway, in that we were very up front with people and we said, “if you’re coming in, we’re going to ask you to talk to people that you don’t know. There’s going to be other people there.” So I doubt that we necessarily would have really got a lot of people with social anxiety coming forward, but we just said, just for the purpose, because this is a first and very exploratory we just wanted to try to make things as easy as possible to analyze. So we just said, “sorry, but we can’t take anyone with social anxiety disorder.”

TPGA: What were the primary findings and implications of your study?

Dr. Crompton: The study’s got a few different arms and legs, but the main body of the study is using a diffusion chain, which is like a scientific version of the game "Telephone." So the researcher will tell someone a story or show them how to do a new thing or teach them a new skill, and then that person has to teach the next person, that person has to teach the next person, and so on. We did this in groups of eight; and we had groups where everyone was autistic and groups where everyone was non-autistic and groups that alternated between neurotypical and autistic people.

We did three tasks across multiple groups and we found that when autistic people are sharing information they do so with a similar accuracy to neurotypical people. But when you have groups of people who alternate information sharing between being an autistic person and a neurotypical person, we see that the amount of information that’s shared, the amount of data that’s transferred within these groups, really drops off significantly.

It’s when you’ve got this mismatch of neurotypes that you’re really seeing a problem in the communication—we’re not seeing that within our autistic-only groups. So that’s what we’re presenting here at INSAR. We did add extra little arms and legs on it, so we also looked at how people rated their own experience of the interaction. We wanted to know what it felt like for them. And so we found that the autistic people felt much more comfortable when interacting with other autistic people. There was much higher rapport when they were talking to other autistic people.

I should say, these are people that have never met before. Everyone was strangers. But they felt much more comfortable and much happier when they were talking to autistic people at a comparable level than with non-autistic people talking to non-autistic people. And, again, when it’s mixed groups of autistic and non-autistic people, the rapport is much lower than we get when it’s just an autistic group or just a neurotypical group.

We’re also having those videos coded for markers of interactional rapport as well. So we’re having the subjective, “what was the experience like for you?” question and we’re also having a master’s student, Becca Stewart, who is coding the videos for objective markers of rapport.

We’ve also done a qualitative arm where we did interviews with autistic people about their experiences of spending time with other autistic people, what that was like for them, and how it compares to when they spend time with non-autistic people. So we’ve got a really nice, complementary set of findings.

TPGA: Were there any findings that surprised you?

Dr. Crompton: I was surprised with the diffusion chain findings where we found that the mixed group didn’t do so well. It was surprising that we found the effect to be as strong as we did. You would hypothesize, based on the literature and the clinical diagnostic criteria of autism, that you would have your neurotypical group doing fine and well and they’re all great, and maybe when you’ve got an autistic person and a neurotypical person that the neurotypical person has wonderful social skills so they’ll maybe be able to scaffold that relationship and scaffold the information transfer so they’d maybe come second, they’d do okay. And that if you had a group of all autistic people that everything’s just going to fall apart. That’s what you would hypothesize—if you’d just read the literature and the clinical diagnostic criteria. The fact that we found in such a strong statistically significant way what we did was really lovely and really great. It was surprising that we found it in such a strong effect, but very lovely to find.

TPGA: Yes, please blow apart those autism stereotypes! So what could have gone wrong?

Dr. Crompton: Oh my god, everything!

[both laugh.]

Dr. Crompton: What could have gone wrong… loads of things could have gone wrong. It was a difficult study to run logistically. Not really in terms of hard-brain science, just logistics and admin. We had to match all of our groups on age and gender, and we had to get people to come in, in groups of eight. A lot of people traveled a really long way. And we had to say to people, “you’re going to come in to this horrible, not very nice building, in Edinburgh that you’ve never been to before, and talk to people that you’ve never met before, and do a task that I can’t tell you what it is right now, but you’ll see it when you get here and you’re going to be here for a few hours.”

It’s a lot to ask of anyone. It’s a huge amount to ask, and quite a stressful experience—so we worked really hard to try to make it very accessible, and to share as much information as we possibly could with people before they came in.

The process was made much easier because we have two autistic consultants on the project. Dr. Claire Evans-Williams, who is an autistic psychologist, and Cos Michael. Claire and Cos were really great in working with me to put together this huge wodge of information that we sent to people that had everything that you could ever want to know, and I think that helped. We actually didn’t have anyone who said they were going to come in and didn’t come in, which is a miracle. It was really great, we had really, really brilliant participants. That made it a lot easier. Logistically, it was difficult in terms of getting… I mean, it’s hard enough to get eight of your pals to get down to the pub at the same time together, so getting eight people to come in and do a thing is pretty tough. So that was hard.

And also, I think another thing that could have gone wrong from a more scientific angle is we could have really picked bad tasks. So the diffusion chain stuff has been used pretty extensively in cultural evolution psychology—which isn’t my background at all. It’s not been used in autism. As far as I know, it’s not been used in autism in adults at all. And we wanted to make sure we picked a task to use in the diffusion chain tasks that was not going to be systematically more difficult for autistic people. So we didn’t want to have a task that the neurotypical people would be fine at and the autistic people wouldn’t because they were autistic. We didn’t want to have anything that was too fine motor-oriented, or had horrible sensory stuff, or had a big language load, or had all these kind of different things that we know that autistic people might particularly struggle with, especially in a stressful situation like this. So we worked for a really long time to find tasks that would be okay and would be possible and acceptable and fun and that was difficult, scientifically as well.

Because you want to get something where you’re going to get a good amount of variance in your data, so you need a task that you can score within a range where you can then get good statistics. It’s difficult to come up with a task that does all of these things that you normally get in scientific tasks but that can still be kind of very measurable in a concrete way. We could have just picked the wrong task and it could have all gone horribly wrong.

TPGA: How has your study been received?

Dr. Crompton: I think it’s been received pretty positively. Obviously, this study comes off the back of a lot of autistic people telling us about their experiences, and saying that they feel more comfortable with other autistic people—so they’re probably reading this and saying, “yes, I know,” which is fine [laughs]. First person accounts are so important. It’s what the study was based on. But to make impact at policy level you need to have data for it as well. It’s just the way of the world. So we needed some data for it even if it did state the obvious to a lot of people.

TPGA: We talk about about that a lot when we discuss research at TPGA. Much of the time, it doesn’t matter if you know; you have to show.

Dr. Crompton: Yeah, exactly. And I think the thing is a few people have said, “that’s very obvious,” and it might be obvious to them—but it’s not obvious to everyone else. It’s really not. And it's not in the narrative that we’re getting about autism in this public dissemination of autism knowledge and autism awareness, so it’s kind of important that we’ve got the data to back that up.

We’ve had a huge amount of really, really positive feedback, and a lot of people saying it really resonates with them. They’ve said that it’s been really nice for them to see that this is a “real” effect, it’s not something that they’re imagining: there’s numbers to back it up.

I think the most important thing the data shows is that autistic people can communicate just fine in the right situation. We’ve had a really nice response of people saying, “thank you for showing that I’m not doing it wrong, I’m just doing it differently,” which is great, so it’s been really nice.

TPGA: How would you like the findings of your study to affect approaches of professionals to supporting autistic people in the real world?

Dr. Crompton: [laughter] …. so...

TPGA: Well, you alluded to this in your previous answer by saying that you can’t change policy if you don’t have data.

Dr. Crompton: Yeah, so I think there’s a few interesting ways that this could be taken forward. I think, most importantly, it’s a pretty radical finding so I think we need replications, and we need similar studies showing similar things. In saying that, there’s work at this conference that’s being shown by Brett Heasman and Kerrianne Morrison and it’s all converging on this same narrative, so there’s this growing body of evidence suggesting the same thing.

I think, particularly from our study, it shows the importance of things like autistic-led spaces and the value that can have, and that the need to create these spaces where autistic people can be comfortable amid themselves and talk to other autistic people is really important—whether that’s as part of schools and education, whether that’s in post-diagnostic support, opportunities for adults, things like that.

I think it’s really important to make sure that opportunity is available for people. The last thing I want people to think we’re suggesting is that we should ghetto-ize autistic people. “You go and talk to the people who are like you.” That’s absolutely not what I’m saying and not what we would want at all. But I think creating these spaces that aren’t led by someone who’s telling you what to do, who doesn’t know what your experience is, is really, really important.

I think that we’ve got a good chance to be leading on and doing some good work from this, and we’re about to start another project based on these findings that’s looking at co-designing a peer support system for autistic adults. I’m working with the Autistic Mutual Aid Society of Edinburgh to create that, and I think it’s a really nice, practical applied way of taking this work and seeing how we can translate these findings into the real world. How can we look at what the applications of these things can be, and whether they can benefit people.

Obviously, it’s difficult to translate basic science findings into clinical practice or educational practice or whatever else. It’s all a step-by-step process, but I think it’s a really exciting step. I’m really excited to see what happens with it.

TPGA: Thank you, Catherine, I really appreciate talking with you.

Dr. Crompton: Thank you.

----

Transcription by Max Sparrow.

Monday, May 27, 2019

AutINSAR 2019: Discussing Autistic Priorities For Autism Research

The disconnect between what autistic people want (and need!) from autism research, and what autism researchers tend to prioritize is why AutINSAR exists: To have a conversation between autistic people and/or autism researchers about needed autism research directions, priorities, oversights, course corrections, and goals.

AutINSAR happens annually during INSAR, the International Society for Autism Research's annual meeting—both live at the conference and simultaneously on Twitter. The discussion provides an opportunity for autism researchers participating and following along to heed the insights and priorities of the autistic population they are supposed to be serving. This matters because, as The Autistic Self Advocacy Network commented during this year's discussion,
"Autism research is missing the priorities of autistic people. The voices and experiences of autistic people need to guide autism research, beginning with which areas to study."
This was the third #AutINSAR discussion, after lively events in 2018 at the Rotterdam conference, and in 2017 at the San Francisco conference. This year was slightly different in that it took place among much eye-rolling by #AutINSAR and other autistic and ally attendees over INSAR leadership's declaration that the conference needed to get back to basic biology research.
Essentially, a "return to basics" would keep the focus of autism research on what professionals are interested in, rather than what autistic people need. This would make said research less, rather than more, useful to autistic people who are already here. Instead, researchers who want to affect autistic people's lives in positive ways would do well to take advantage of resources like the AutINSAR discussions.

Here is how this year's AutINSAR discussion went down:

The IRL #AutINSAR crew Back row: Emily and Manuel Casanova, Jon Adams, Bret Heasman, Sue Fletcher-Watson, Anne Fritz,  Cat Hughes, Aaron Bouma, Bethan Davies, Corina Becker, Stephanie Vreeland, and Steven Kapp Center row: Sara Luterman, Christina Nicolaidis, Lorcan Kenny, Christine Jenkins, and Louise Tardif. Front: TPGA editors Shannon Rosa & Carol Greenburg [image: Crowd of neurodivergent people posing in the corner of the INSAR press room.
The IRL #AutINSAR crew
Back row: Emily and Manuel Casanova, Jon Adams, Bret Heasman, Sue Fletcher-Watson, Anne Fritz, 
Cat Hughes, Aaron Bouma, Bethan Davies, Corina Becker, Stephanie Vreeland, and Steven Kapp
Center row: Sara Luterman, Christina Nicolaidis, Lorcan Kenny, Christine Jenkins,
and Louise Tardif. Front: TPGA editors Shannon Rosa and Carol Greenburg
[image: Crowd of neurodivergent people posing in the corner of the INSAR press room.]
Welcome to #AutINSAR, a Twitter chat between #ActuallyAutistic people and autism researchers. If you can’t join live, you can continue to answer questions. #INSAR2019
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019

We will be asking #AutINSAR questions in the format Q1, Q2, etc. Please answer with A1, A2 if you can, for tracking purposes (we will be compiling an article for TPGA as we have for all previous chats). #INSAR2019
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019

AutINSAR Questions

  • Q1: What are your top three priorities for autism research?
  • Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
  • Q3: What concerns do you have about the directions in which autism research is headed, based on work presented at #INSAR2019, or in general?
  • Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations?
  • Q5: Which co-occurring conditions need more research attention, and why?
  • Q6: What are some concerns of minority autistic community members that don’t get enough research attention?
  • Q7: What are some barriers make that make autism research results less accessible to #ActuallyAutistic people (cognitive, financial, etc), and how can we reduce them?
  • Q8: Any topics we’ve missed that you’d like to discuss?

AutINSAR Participants 


Hi I’m Carol Greenburg, one of the editors @thinkingautism Welcome to #AutINSAR Tweetchat!
Carol Greenburg (@Aspieadvocate) May 2, 2019

Hi! We run #AutChat, a weekly Twitter chat for autistic and similarly neurodivergent people. We’ve been running for >4 years. We’ll post some thoughts from our personal accounts too (@theoriesofminds and @endeverstar). #AutINSAR #INSAR2019
— #AutChat mod (@autchatmod) May 2, 2019

hi #AutINSAR! i'm endever*, one of the #AutChat mods. i'm 33, from usa, trans, queer, autistic, crazy, ravenclaw, writer, crafter.
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

Very excited to be involved in the #AutINSAR chat https://t.co/AKCOC3qdcX
Cat Hughes (@naturetable) May 2, 2019

Ready and waiting for #AutINSAR.
Last year it was the best part of the conference and a great participatory activity given the constraints of the conference cost and distance for many autistic people.
aut Sarah (@Sarahmarieob) May 2, 2019

Hello, I am Solveig! Sometimes I dive into chats without introducing myself. Autistic/nonbinary/library profession. #AutINSAR
Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

Just realized I forgot to introduce myself on the #AutINSAR chat! I'm Laura - I'm a researcher based at @CRAE_IOE in the UK (London). You can read more about me and my work in this interview with @shannonrosa @thinkingautism: https://t.co/E5MLRpe5Kh
Laura Crane (@LauraMayCrane) May 2, 2019

I never introduced myself - sorry! I’m a developmental psychologist based at @EdinburghUni in the UK #AutINSAR
Sue Fletcher-Watson (@SueReviews) May 2, 2019

Oh I guess I also forgot to introduce my me.
Alyssa, non-binary graduate student in neuroscience. I work on brain-computer interfaces for people with ALS, AAC for autistic adults, and general neurodiversity stuff. #ActuallyAutistic
#AutINSAR
Alyssa (@yes_thattoo) May 2, 2019

Don’t forget to introduce yourselves for #AutINSAR (like I did).
Hi, I’m Shannon Des Roches Rosa from #TPGA. I’m the parent of an autistic dude who is completely awesome. #INSAR2019
Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019

#AutINSAR Hello I'm just introducing myself to the twitter chat, I'm a postdoctoral researcher @CRAE_IOE and I am tweeting along with Anne Fritz from the CRAE account
Dr Brett Heasman (@Brett_Heasman) May 2, 2019

HelloAll. My name is Aaron Bouma. Military Specialist for Carleton County New Brunswick Canada. #ActuallyAutistic and owner operator of @BoumaWoodwork. Vice chair of Woodstock NB Autism Family Friendship Group. #AutINSAR #INSAR2019
Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

We’re autistic led - equality and diversity especially thru creative endeavour - passionate about involvement of autistic people in research and the arts

@soundcube tweeting is he a scientist who draws or an artist interested in science?

ambitious about autistic people #AutINSAR
Flow Observatorium (@ObservatoriumF) May 2, 2019

#AutINSAR Am a #ActuallyAutisticScientist who studies overlap with #EhlersDanlosSyndrome (as well as #genetics). Also have Generalized Hypermobile Spectrum Disorder. Nice to meet you all!
Emily Casanova, PhD (@EmLyWill) May 2, 2019

Hi everyone! I’m an #ActuallyAutistic writer based in Washington DC. I founded @NOSeditorial. #AutINSAR
Sara Luterman (@slooterman) May 2, 2019

And to introduce myself: I work at @AutisticaUK with our Discover network and our Insight Group- making sure autistic people get heard and involved in research and policy all the way through!
I’m also autistic myself- diagnosed as a young adult #AutINSAR
Bethan Davies (@BethAnDavies28) May 2, 2019

Following Shannon’s lead and introducing myself near the end of #autINSAR I am Max Sparrow @UnstrangeMind, autistic author, educator, and member of We Are Like Your Child, a group of neurodivergent writers sharing stories and ideas about how we navigate life.
We Are Like Your Child (@wearelikeyrkid) May 2, 2019

#autINSAR I’m the founder of the Campaign Against Phony Autism Cures and a co-founder of Autistics for Autistics (A4A), the Canadian self-advocacy organization 馃檪 @A4AOntario
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019

Thanks for organising #AutINSAR - I am Lorcan, a non-autistic autism researcher who now works for @AutisticaUK trying to bring autism researchers and autistic people closer together via the Discover network, more info: https://t.co/U3ThvTDB2h https://t.co/AlQOT3UZta
Lorcan Kenny (@LorcanKenny) May 2, 2019

Late introduction from me - I’m Jac, Autistic postdoctoral research associate at Macquarie Uni, Australia, working with @liz_pellicano. Advocate, psychologist, queer, non-binary, they/them. #AutINSAR
Dr Jac (@JacdenHouting) May 2, 2019

This is Christina Nicolaidis. I’m a physician, researcher, professor, and parent. I do participatory research with autistic adults. I co-Direct AASPIRE (https://t.co/6BqgySQCLx) and am Editor-In-Chief of Autism in Adulthood (https://t.co/CAwzYkT4P4). #AutINSAR
Christina Nicolaidis, MD, MPH (@cnicolaidis) May 2, 2019

Thanks @thinkingautism for organising such a fun and fascinating #autINSAR I'm Cat. I spent a long time working in autism and mental health research and now work at @AutisticaUK I'm really passionate about seeing autistic people included and active in all levels of research.
Cat Hughes (@naturetable) May 2, 2019

Intro tweet: I am an autistic filmmaker, advocate, and video game enthusiast/collector #AutINSAR
GhillieGuide (@Ghillie_Guide) May 2, 2019

Hello. I'm a Catholic priest (@FrMatthewLC) who is #ActuallyAutistic, but who also reads a lot of research on genetics as it relates to bioethical questions as I'm studying a doctoral degree in ethics. So I'm kind of wearing multiple hats in discussions like #AutINSAR.
Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019

Q1: What are your top three priorities for autism research? 


A1 Research should focus on how to improve quality of life for autistic people across the lifespan, how to end racial and gender disparities in access to dx and services, and best practices in AAC and supported decision-making for people with all kinds of support needs. #AutINSAR https://t.co/QjWJWYNIbX
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A1 My top for autism research priorities are Jobs, Mental Health Management, and skills building #AutINSAR
— Aaron Bouma at #INSAR2019 (@CANADA566) May 2, 2019

A1: I think it's REALLY important for the autistic community to decide autism research priorities - rather than autism researchers... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A1: At TPGA, we are behind any #autism research that improves the lives of #ActuallyAutistic people and their families. #AutINSAR #INSAR2019
— Shannon Des Roches Rosa (@shannonrosa) May 2, 2019

A1 #AutINSAR #INSAR2019
1. Autistic people’s mental health
2. Suicide in autism
3. Supporting autistic people leading participation and involvement in research
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A1: I totally 100% agree with @soundcube that these are fundamental priorities. At @CRAE_IOE, we've done co-produced research on mental health (published in @journalautism, which is free to view here: https://t.co/LWSKztqKwa) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A1: The journal Autism Research has published 29 brief commentaries on current gaps in autism research. We're curious to know how others feel! https://t.co/S9Y5h54xqh #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A1: What many autistic people are telling us is that mental health is a top priority (e.g., @AutisticaUK research) https://t.co/B2yVVRVX0u #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

a1 hard to choose, but the first things to that come to mind = communication supports (beyond requesting!), comorbidities like eating disorders, and sensory issues #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A1. One of my top priorities is the need for reasearch on QoL for autistic elders like me (55 yrs old) and my 91-year old #Actually Autistic Dad #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019

A1 addressing early death/suicide rates, greater understanding of autism expression and needs in those with marginalized genders/races, addressing basic life needs lacks: food, housing, medical care, etc. in Autistic adults #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A1: Sleep, suicidality, and seizure research are my personal top three issues. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019

A1: top three priorities
1. Co-production being done meaningfully and not to fulfill diversity criteria but in all areas.
2. Practical, applied and applicable research.
3. Lifetime research- we are young and old! #AutINSAR https://t.co/so8NGPFIcH
— aut Sarah (@Sarahmarieob) May 2, 2019

#autinsar A1. 1) more participatory research throughout the entire research process. From writing the grants, to designing the study, to analysing and collecting data, to taking the findings back to the community/ developing leads for further research, building future leaders
— CRAE (@CRAE_IOE) May 2, 2019

A1: at @AutisticaUK we are interested in research into the community priorities we established in a priority setting partnership https://t.co/8x4SRiEMGf but there are some qs not in here that are also a priority for us, like addressing early mortality in autistic people #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A1: I am also interested in research into the development of outcome measures by autistic people and their supporters so that future research can test supports that have autistic-informed outcomes as their primary outcome measures #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

yes! i feel like most outcome measures in research are "acts less autistic now yay" (:/) rather than "better quality of life, better mental health, etc" #AutINSAR https://t.co/Fp4hIAV81J
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

You’ll love the work being done by @KerenMacLennan who has definitely seen that current measures aren’t always fit for purpose or make awful inferences.
We need to go back to most drawing boards. #AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019

ICYMI: We just published a news story on a study identifying predictors of early death in autism: https://t.co/86RocL9dfo #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A1
1) How to convey our needs to other people in ways that result in getting those needs met
2) Effective treatment for consequences of not receiving needed support (including cPTSD)
3) Effective treatment for co-conditions #AutINSAR
— #AutChat mod (@autchatmod) May 2, 2019

A1: literally exactly these three, except in reverse order. #AutINSAR https://t.co/B4X93ztE8Y
— Dr Jac (@JacdenHouting) May 2, 2019

A1. 2) to work across discipline boundaries - its not biological versus non-biological!
— CRAE (@CRAE_IOE) May 2, 2019 #autinsar

Double-empathy work such as by @milton_damian. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A1. 3) mental health research. Yet It is important for the autistic community to decide autism research priorities. Not the autism researchers! #autinsar 
— CRAE (@CRAE_IOE) May 2, 2019

A1: 1) Helping #ActuallyAutistic young adults to thrive in either education or employment, 2) investigating long-term consequences of ABA, 3) reducing suicidality in autistic people *cough* of a certain age. #AutINSAR
— Douglas Bass (@douglasbass) May 2, 2019

This is personally important to me as the #ActuallyAutistic Mom than #ActuallyAutistic teen who we are trying to help prepare for a transition to adulthood that is successful, first and foremost, in HIS eyes. #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019

A1: Only 3? Autism across the lifespan, co-occurring health conditions, and how to improve access to communication (incl how to support families in *IMPLEMENTING*, not just obtaining, AAC.) #AutINSAR
— Julia Bascom (@JustStimming) May 2, 2019

A1 a research priority is best supports for anorexia #ActuallyAutistic. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A1:
1) #AAC as you can guess because it’s what I do.
2) Suicidality and mental health in general
3) Sleep
#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A1: (1) Identifying alternatives to, e.g., socially performative therapy/counseling which might not be suitable; (2) Examining whether studies showing “recovery” in fact just show deep masking; (3) Developing understanding of effects of diagnosis when late in life. #AutINSAR https://t.co/Pv2ixjVldn
— Hello. My name is Bix. (@bixmediocre) May 2, 2019

A1: Hard to narrow down to three! I think research into autistic people dying younger on average needs to be a priority (including suicide, epilepsy, access to health care) and as a social worker I would like to see abuse of autistic children made a research priority. #AutINSAR
— Brooke Winters (@brookewinters33) May 2, 2019

Q1) To focus on research that supports existing autistic people and how we can inclusion and acceptance.
No cures and nothing that supports harmful therapies and treatments. Yes, this includes ABA.#AutINSAR https://t.co/KKM6gCNF3W
— Milla the four-eyed, nerdy princess! (@subtlykawaii) May 2, 2019

Can we just agree that we’d love for all the health mysteries that are hinted at need to actually be recognised, understood and much easier to gain information/ diagnosis about.
#AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019

I am not autistic but my daughter is and we have found that there is a barrier to treatment because of her complex needs due to co-occurring diagnoses. I would like to see more research on therapies that target these complex cases. #AutINSAR
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019

I am also concerned with the fact that many autistic women have great skills, like my daughter, but because of many reasons are unable to enter the working world. I would like to see more research on females w/ autism and what the barriers are to employment. #AutINSAR
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019

As an #ActuallyAutistic woman who has had many such work-world difficulties, this answer resonates with me. #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019

I see different levels of needed research: 1) long term (10+years) for therapy (drug and behavioral/support) development; 2) immediate interventions to target extreme distress reduction and increase life expectancy for people with ASD and their families. #AutINSAR 
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019

A1: Priority 1 is an accurate accounting of autistic people at all ages, both in the U.S. and worldwide. We also need far more research on effective supports across the lifespan, and far more collaboration between researchers and #ActuallyAutistic folks. #AutINSAR #INSAR2019 https://t.co/0W3eCFxImv
— Steve Lieberman (@stevemlieberman) May 2, 2019

-Understanding long-term effects of ABA on the autonomy of autistics -- especially with respect to keeping ourself safe from abusive situations.
-Research that includes autistics of all age
-Better ability to recognize autism in girls and people of color
A1 #AutINSAR https://t.co/PWsd89vdsp
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

I’m also interested in more gender studies specific to neurodivergent people in general — something that would lead us to an easier transition process for those of us who want/need it.
I’m talking autistic transgender studies.#AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

A1:
1) how to improve life outcomes (health, employment, inclusion, wellbeing);
2) how to treat co-occurring conditions;
3) how to address needs of autistic adults with intersectional identities (eg related to gender, race, sexuality). #AutINSAR
— Christina Nicolaidis, MD, MPH (@cnicolaidis) May 2, 2019

A1 1) research to ensure reliable communication across the autism spectrum, 2) research on priorities values across autism stakeholders in their own communities, 3) research to try to end abuse against autistic people. #autINSAR
— Steven Kapp (@drstevenkapp) May 2, 2019

I’d like to see a comprehensive de-bunking review of the main forms of autism pseudoscience that can be shared with health professionals and researchers. #autINSAR 
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019

Sleep research, why do we experience so much suicidal ideation, how can neurotypical people communicate with us better (note how I phrased that!)#AutINSAR #INSAR2019
— 馃彸️‍馃寛Future Dr Valour- They Who Rant 馃彸️‍馃寛 (@ValourRain) May 2, 2019

A1: At #APA2019 I’ll be presenting on research priorities from within the autistic community. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

A1:
1. trauma - Is anyone doing research into how a lifetime of small compromises and invalidation is traumatic? cPTSD as often comorbid?
2. Ontology - has anyone taken a crowd-sources inventory of autistic traits?
3. Post-behavioral diagnostic criteria.#AutINSAR
— your friend myk (@mykola) May 2, 2019

A1:
1) How diagnostic criteria applies to demographics not well represented in existing research.
1) Developing understanding of communication in relationships between autistic and NT.
3) Analysis of social process of disclosing diagnosis in masking autistic adults.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019

R1 #AutINSAR #INSAR2019 Les effets n茅gatifs, traumatisants des interventions recommand茅es mais qui peuvent 锚tre, dans la pratique, irrespectueuses ou violentes dans les diff茅rents milieux de vie (茅cole, famille, services, travail)
— Neurodiversit茅 Art (@LucilaGuerrero_) May 2, 2019

[R1 #AutINSAR #INSAR2019 the negative, traumatic effects of the recommended interventions but which can be, in practice, disrespectful or violent in the different living environments (school, family, services, work)]

A1 #AutINSAR
1. Treatment of hypo- and hyperkalaemic sensory overstimulation and cofactors such as iNOS overproduction
2. autistic apraxia (body-mind disconnect)
3. #CRPD violations and trauma in ABA.
4. RCCX Theory.
(Ja, I know you said three...) https://t.co/qHpLzU9f4p
— Tania | AutisticStrategies.Net | #OptimiseAutism (@ekverstania) May 3, 2019

#AutINSAR
The link between self-esteem issues, autism and suicide/suicide attempts/suicidal ideation. Anxiety and depression in relation to autism. Platforms to enable autistic people to find jobs, and to help with work related issues.
— Rowan (@Rowan55388496) May 3, 2019

Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations? 


A2 Autism research is missing the priorities of autistic people. The voices and experiences of autistic people need to guide autism research, beginning with which areas to study. We promote a CBPR (Community-Based Participatory Research) approach to autism research. #AutINSAR 
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A2. I’m glad to see that sensory processing is starting to become more of a research interest, but it still feels like it gets low priority relative to how significant it is in my personal experience. #AutINSAR #INSAR2019 https://t.co/TWJbGhMsWM
— codeman38 (@codeman38) May 2, 2019

A2. Other topics that are frequently discussed within the autistic community but seem much less common in research (at least from my experience): how autism interacts with gender (both cis and trans); experiences of adult autistics. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019

A2 AFAICT, executive dysfunction! and supports to cope with it. #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A2 How many areas are overlooked. Access to resources in rural areas, including mental health as well. We need to change that and guide all areas to have a voice. #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

A2: I know nothing about it, but keep hearing about #EhlersDanlosSyndrome in relation to autism (from autistic people). Nice to see some work presented on it at #INSAR2019 https://t.co/wUetdbTdQ6 #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A2: Everything. MOTOR DIFFERENCES, including inertia. Mental health, addiction, and suicide. Actual reasons behind behaviors. Different responses to different kinds of prompts or support. Burnout. Fluctuating skills. Actual outcomes of ABA and other interventions. (1/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A2: Responses to medications. Hypermobility + other common co-occuring health conditions. Ways to support daily living skills. Ways to get free. Access hacks. Experiences of abuse and neglect. Autistic parenting. AT. Combatting stigma, promoting inclusion. (2/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A2: Also we do actually talk a lot about ACTUAL heterogeneity--we just don't do it in public, because autism researchers have proven over and over again that they aren't ready to handle it. (3/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A2 We are seeing more of these topics covered at #INSAR2019 than in years past, which gives me hope. Not perfect, but some improvement. #AutINSAR
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019

A2 also the broad range of queer/trans identities found in our community, including how we (especially aac users) have conversations about identity, sex ed, and consent #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A2 We talk a lot about our experiences of other people, of physical settings, of practical daily life demands. These aren’t technically “about” autism but they are major areas of concern for many autistic folks. (e.g., food prep, navigating transportation) #AutINSAR
— #AutChat mod (@autchatmod) May 2, 2019

A2 #AutINSAR #INSAR2019
-Definitely Ageing and care changes needed over the lifespan
-Ways trauma effects autistic people and causes - betrayal trauma is a huge issue as we ‘love hard forget not’ as it were
-DSM change esp CatA in PTSD for autistic people - we lose people this way
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A2 involving high-support needs individuals in all kinds of research. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A2: what’s missing?
Conversations miss the personhood of autistic people, the implications research can have on understanding/ perceptions and that autistic people want to lead full lives we just may need support (school/ work/ health/ care/ leisure).#AutINSAR https://t.co/QQ8CoKYAhz
— aut Sarah (@Sarahmarieob) May 2, 2019

A2: So, so many! Basically everything to do with adulthood. Trauma. Long-term consequences of early intervention. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

A2: I am not autistic so can't speak for autistic people's interests but from conversations I've had it is not always about what is absent entirely but also if the proportion of interest in different topics reflect community priorities #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A2: some examples include sleep difficulties, food and eating challenges, managing physical health difficulties, keeping employment (rather than simply attaining employment), assessing how autistic involvement actually changes how research gets done #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A2: I don’t think I’ve ever seen the link between Ehlers-Danlos and autism discussed before. It doesn’t affect me personally, but it is a major source of pain for my friends. I’m also thrilled to see emerging work from @aaspireproject on #AutisticBurnout. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019

A2: I think the thing really missing from research conversations is how we better include and involve autistic people as research partners. I'm a big fan of the work being led by @cnicolaidis @dora_raymaker in this respect! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A2: To find out more about the @aaspireproject, see this recent paper in @journalautism: https://t.co/E8d7ANMGVu #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A2 researching the importance of connecting with each other and our #ActuallyAutistic community. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A2 So many things! Autistic culture, shared understanding and creativity are hugely overlooked. #AutINSAR https://t.co/upYwPbnduV
— Cat Hughes (@naturetable) May 2, 2019

Q2: Some things #ActuallyAutistic people talk about more than researchers: trauma, PTSD, c-PTSD, mid-life Autistic burnout (losing skills and coping abilities after years of struggle/masking), Autistic inertia #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A2 (continued) Many Autistic adults need job opportunities that are *not* math and tech oriented and need researchers to help break the stereotypes behind the job program skew #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A2 the developing world! I want to know more about my peers across the world. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

#autINSAR A2. From conversations with autistic people, CRAE has observed a mismatch between the kind of research that is conducted and the kind of research autistic people would like to see. The funding landscape needs better alignment with autistic research priorities.
— CRAE (@CRAE_IOE) May 2, 2019

A2: Ehlers Danlos, part time aac use, trauma, anything related to adults, how to provide supports for people with significant needs while maintaining autonomy and civil rights #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

Oh and myotonic muscular dystrophy:
Type 1 (childhood onset) known to be associated with autism. Type 2 (adult onset)? No one knows. Maybe check?#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A2 I want to know more how are voices are heard in policy development. #AutINSAR
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A2: Keeping stims hidden, self-care strategies, exhaustion from trying to determine how a certain interaction went, self-esteem issues, being considered lazy or careless #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A2 It shouldn’t be revolutionary that autistic people might actually make pretty accurate inferences about the possible processes behind autistic thought, behaviour and processing (but it feels that way).
#AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019

A2 I’d like more research and ensuing documentation of Autistics' atypical or paradoxical reactions to medications. More bluntly put, I find what I called the “medication mambo” a horrible trial for our family every time we have to do it to help our autistic son. #AUTINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019

A2: Ehlers-Danlos syndrome (my spelling might be wrong) #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

I research participatory research methods (yes, it’s very meta). I *hope* this will contribute to more genuine and meaningful co-production of autism research with autistic people - resulting in research that actually addresses our #ActuallyAutistic priorities. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

You can see some of Dr. de Houting’s work on participatory autism research here: https://t.co/IvNmXsk8wT #AutINSAR #INSAR2019
— Shannon Des Roches Rosa (@shannonrosa) May 2, 2019

A2 Trauma-informed and autism I formed maternity and pregnancy supports. #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

A2: Treating us like human beings would be a start. Certainly there needs to be research on the harm certain “treatments” that silence visible indications of underlying distress have on #ActuallyAutistic people. #AutINSAR #INSAR2019 https://t.co/3Se4QE8z8T
— Steve Lieberman (@stevemlieberman) May 2, 2019

Research is almost entirely focused on children, and I can't find a lot out there with respect to adult autistics.

Then, the research is almost entirely focused on things like neurology and DNA and studying complex proteins... and nothing to do with quality of life. #AutINSAR A2 https://t.co/l3IVKwMxNi
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

A random thought, but I am wondering if we can talk about how autistics seem to express emotions differently than allistics. For instance... dad thought I was doing fine because I was humming to myself, but I was humming to myself because I was VERY MUCH NOT OKAY. #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

Oooh, yes! I’ve had *so many* interactions where my body language was misinterpreted and I legit didn’t even realize that’s what was happening until someone explained it explicitly. #AutINSAR #INSAR2019 https://t.co/ep4D1fhXU7
— codeman38 (@codeman38) May 2, 2019

I’m working on a chapter about cross-neurotype communication connecting to cross-cultural communication and I honestly think that fits what I’m going to be talking about. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

In Canada some of what we talk about is: accessibility in public spaces. Poverty. Inaccessibility in employment. HIV. Sex and safety around dating. Communication barriers to accessing medical care. Need for trauma-informed care. #autINSAR 
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019

Poverty is a huge issue in our community in Canada and no one is researching it. We need hard data to work for change. #autINSAR. @A4AOntario
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019

When we measure sensory variability in #ActuallyAutistic people using current methods, we’re measuring behavior, not people’s internal experience or biomarkers. Behavior is not a reliable indicator of how distressing an experience is. #INSAR2019— Sara Luterman (@slooterman) May 2, 2019

Especially not when therapy explicitly teaches us to act like we’re not in distress... #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

#AutINSAR I'd love to see more conversations on supporting #ActuallyAutistic people's civic and political participation. From activism and self-advocacy to joining and taking part in political parties, movements, civil society and in communities more broadly. #INSAR2019 https://t.co/8kixA1NSMB
— Adrian Carroll (@adrian_carroll) May 2, 2019

I would like to see that too. I’m #ActuallyAutistic, from the U.S., and volunteered for three local campaigns leading up to the midterms. On a national level, I’ve been honored to volunteer for #PostCardsToVoters for almost all of the two years it has existed so far. #AutINSAR https://t.co/gfNg5MsWE0
— Carol Greenburg (@Aspieadvocate) May 2, 2019

— S Owocki (@swahkee) May 2, 2019

A2. Burnout, masking, trauma, bullying, evolving diagnostic criteria (e.g. not based on allistic observation of traumatizes white male children). How do we reach the many undiagnosed adults suffering in isolation and alienation?#AutINSAR
— your friend myk (@mykola) May 2, 2019

A2: A big thing that’s left out seems to be autistic burnout and suicidal ideation, a lot of the stats that advocates need to make their point on this topic are community generated/not scientifically recognized! #AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019

A2: Large study on autistic adults and #burnout; more research on positive psychology and approaches; identify "problems" that are actually social constructs to shift the narrative. #ActuallyAutistic #autINSAR #INSAR2019
— Janet Mulligan Bowen, MLS (@theScootorian) May 3, 2019

A2 The small things that make life difficult, people staring at autistic children in shops, thinking autistic people rude if they sometimes don't know what to say - because, in their view, if you know you are autistic you can do something about it, but choose not to. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019

Q3: What concerns do you have about the directions in which autism research is headed, based on work presented at #INSAR2019, or in general?


A3 In General, I’m seeing too much suppressive behaviour research and also cure research. We #ActuallyAutistic people don’t want to be cured. Organizations putting money into this doesn’t help anybody now! #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

A3 I’m very concerned about research being translated uncritically into tech for fine-grained behavioral control and surveillance. We urgently need research on harms done including when implemented as intended. #AutINSARhttps://t.co/52vayHFOJt
— theories of minds (@theoriesofminds) May 2, 2019

A3 #AutINSAR @AutismINSAR has a skewed understanding of "balance". Adult studies, the disability studies field, social work, optimal outcomes as defined by us, participatory research... https://t.co/84QzML6MbG
— Louise 脗没 (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019

A3: I have lots of concerns about how much reluctance there seems to be about meaningfully including autistic people in research (i.e., not just as research participants) from certain quarters... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A3
Organisations that are gatekeeping and push research topics
Research that has links with organisations determined to cure or prevent us even if that’s not an ‘obvious goal’ it’s an ‘own goal’ as far as autistic people are concerned
Research ‘without us’
#AutINSAR #INSAR2019
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A3: the view that biological and non-biological research should happen separately in silos - we stand to gain a lot from basic science (e.g., in genetics) IF it is done from an autistic-informed perspective and IF it is communicated in a safe, sensible way #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A3: Also concerned by researchers who talk about their research in a way that suggests they have never met nor spoken with autistic people about how their research relates to their lives #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A3: There still seems to be a lot of research that happens without having the question ‘how will this benefit autistic people’ running right through from the first initial idea #AutINSAR https://t.co/B299HKDHOM
— Bethan Davies (@BethAnDavies28) May 2, 2019

A3: One simple way to ensure your research does benefit autistic people is to include autistic people from the very beginning - this still seems quite a novel approach in some places #AutINSAR
— Bethan Davies (@BethAnDavies28) May 2, 2019

Considering how many contradictory neuroanatomy results there are, for example, plus psychology’s replication crisis in general... yeah I’ve got this concern too. #AutINSAR https://t.co/lftleLIFUb
— Alyssa (@yes_thattoo) May 2, 2019

A3 see my previous comment on outcome measures is probably my main concerns - if we're measuring the wrong things, we get lauded "evidence based practices" that are actually intensely harmful #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A3 A concern is a lack of discussion on research to practice. #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

A3 We are concerned about the amount of autism research that centers around causation rather than around how best to support our community over a lifetime. #AutINSAR https://t.co/fHdZ2w6Ru2
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A3 We hope to see more research that tackles issues around access to long term services and supports that allow us to thrive in the community. #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A3: I am frustrated by the amount of research that assumes being indistinguishable from a neurotypical person behaviorally is the same thing as not being in distress. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019

A3: I'm concerned about the focus on treatments to literally alter the brains of autistic people rather than change a single thing about the world around us. I'm concerned that success in these studies is measured by how much we blend in, not on how we feel about it. #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A3 Really surprised by an apparent reluctance from some to include autistic people in research, and a discomfort in communicating findings to them. If communicating research to autistic people makes you uncomfortable, who is it designed to benefit. #AutINSAR https://t.co/fTQC3HwXfY
— Cat Hughes (@naturetable) May 2, 2019

A3: research concerns
Research is so connected but is often segregated. Ideas aren’t cross referenced with those it implicates. I’m concerned that participation isn’t viewed for its value but rather it’s ‘burden’. Going down the wrong rabbit holes. #AutINSAR https://t.co/U2l7Eptgbn
— aut Sarah (@Sarahmarieob) May 2, 2019

Q3: After seemingly taking small steps towards inclusion in recent years, the move towards more biological research and less inclusive attitudes to Autistic people is very disappointing #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

A3 It’s great to see more research focused on the harm of restraints and seclusion. We need even *more* dismantling of the harms that have become standard treatment for Autistic students, clients, and patients. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A3: I’m hugely concerned that fundamental scientists rarely see community perspectives as relevant to their lab work. This work may yield impact in a decade or more so all the more reason to make sure it’s at the cutting edge of community priorities.
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A3: I’m frustrated with the extent to which autistic autism researchers are assumed to be writing only about our own experiences, and not to be doing “hard” science.
My PhD is going to be in neuroscience. I do brain computer interfaces. I can do hard science. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

#autINSAR A3. As mentioned previously - there still seems to be a lack of research that meaningfully includes autistic people throughout the entire research processes.
— CRAE (@CRAE_IOE) May 2, 2019

A3: Anything about us without us. Sneaky high-tech efforts for reprogramming, surveillance and control. Agendas to breed autism out of existence #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A3 concerned about the continued proliferation of animal models. Studying animals to understand autism reduces complex neurological states of being to observable behaviors only. Sensationalized reporting of mouse model studies harm us. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A3 I’m concerned about technology based monitoring systems that aren’t co-created around an autistic-identified need.
Massive risk of normalisation here as well as intrusion and privacy issues. #AutINSAR https://t.co/IBinAw05MD
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A3: The amount of work being done on supports, aging issues, and anything that looks beyond a childhood experience or a clump of cells is minimal. There needs to be a rebalancing of research priorities, and the sooner the better. #AutINSAR #INSAR2019 https://t.co/kjjf14u8jy
— Steve Lieberman (@stevemlieberman) May 2, 2019

The research studies I have personally taken part in are structured in a way that it was literally impossible for them to learn anything accurate about autism.
Like, there was no way to tell the researchers "You're asking all the wrong questions!!!"#AutINSAR https://t.co/EgEARKNRlX
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

Another ‘fun’ thing is when researchers think they’re asking one thing but are actually asking another.
One classic example is “Have you heard voices nobody else did?” - supposed to be about audio hallucinations, but also true for hypersensitive hearing. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019

Hi yes I hear things other people don’t. For example, I still hear 20kHz sounds! #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019
Also I absolutely have unexplained bruises. Because I can’t keep track of all the walls, desks, cabinets, etc. I walk into, not because I bruise easily. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

I say no when I’m asked because it’s just a yes or no question. And I don’t want to be pathologized based on something they badly interpret.
See... I can’t do yes/no questions like this. #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

A3 How can we prioritize funding for practical and immediate quality of life concerns in autism research and at INSAR? Can we understand that #neurodiversity means supporting both strengths and weaknesses, and make space for it? #autinsar 
— Steven Kapp (@drstevenkapp) May 2, 2019

A3: Vasopressin! #AutINSAR
— Damian Milton (@milton_damian) May 2, 2019

A3: Robots for social interaction, I mean please. #AutINSAR
— Damian Milton (@milton_damian) May 2, 2019

CW suicide
A3 Quite frankly, I am concerned by sessions on suicidality in autistic people that don't feel accessible to me, as an autistic person with an autistic sibling who died by suicide who has PTSD related to that.
I don't know what to do about this however. #AutINSAR
— S Owocki (@swahkee) May 2, 2019

#AutINSAR Pathologization of autism in autism research: https://t.co/f6INnSFcTk
— AutisticScienceLady (@AspieHuman) May 2, 2019

A friend of mine may not be able to finish their dissertation as it is stuck in ethics cos they’re being restrictively overprotective. The study is of autistic ppl she works with every day! #AutINSAR
— Stu (Autism ACCEPTANCE not just awareness) Ferrol (@TheFerretLives) May 2, 2019

A3: Those who are gatekeeping agendas and they don't walk the talk, big pharmas/ABA organisations funding some good research thinking they can get away (And they do!) Robots to teach emotions, lack of a humanised philosophical approach, tokenistic autistic participation #AutINSAR
— Dr Georgia Pavlopoulou (@JoPavlopoulou) May 2, 2019

A3: The primary concern I have with the current direction of autism research is a failure to seperate from the traditional care and support structures of government.
I fear the business of autism being put ahead of the support of autistic people!#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019

A3. Exploring genetics can be good if used to help those diagnosed early by such methods. However, I fear that our current mindset that devalues autistic life will mean that genetics is often used to abort babies because they're autistic. #AutINSAR https://t.co/B4WaaLw6fv
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019

A3: Anything about us without us. Sneaky high-tech efforts for reprogramming, surveillance and control. Agendas to breed autism out of existence #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A3
Very worried about future uses of genetic testing. When my sons were diagnosed (before I was) I had many, many comments to the effect that at least I knew now, so I wouldn't have more children. As if the world would be better off without autistic people in it. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019

Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations?


A4 @soundcube giving the autistic POV alongside @MHAutism @Sarah_NottsUni er al ‘Suicidality in autism’ is important for those of us ‘still’ here - it gives hope that autistic people belong #AutisticNarrative counts 101% in research. #AutINSAR #INSAR2019
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A4: I've been involved in research about how autistic people wish to be described, how they wish to be educated and the knowledge doctors have about autism #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A4: Also, my PhD focused on executive function (planning, multi-tasking and organising skills) that shows autistic people without learning difficulties may need some help with these skills but they are often not assessed in clinical/educational practice #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

My research on terminology preferences of autistic people can be found here: https://t.co/ik5jOJ2Uu5 #AutINSAR https://t.co/4irp0SKR90
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A4: I'm proud of the work we did with GPs too (https://t.co/Vq7kqj2rIk). Carole Buckley did some amazing work building from this survey to ensure that GPs in the UK better support their autistic patients #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

Executive functioning is my primary difficulty with both feeding myself and making progress in my own research, so yeah I care about this. #AutINSAR https://t.co/LcYWKrdfPy
— Alyssa (@yes_thattoo) May 2, 2019

A4: One of my favourite research studies was evaluating an autistic-led post-diagnostic/identification group run by @carolinehearst. Was amazing to document the benefits of autistic-led support #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A4: I hope that more autistic people who find out they are autistic (either self-identifying or newly diagnosed) benefit from autistic-led support. #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A4: Well some people are already using my paper to argue for AAC access for people who also have oral speech. So that’s a now thing. https://t.co/8aHiGq4NJF
#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A4 in my role with @AutisticaUK, all research funded is based on community priorities and addressing actual, practical challenges. Our projects driven by autistic people really demonstrate this (welfare, maternity, gastrointestinal issues, parenting) #AutINSAR https://t.co/zbrMVT03Ko
— Cat Hughes (@naturetable) May 2, 2019

#autINSAR A4. Many social barriers autistic people face are because autism is so poorly understood in society. With research on employment, there is an opportunity to change organisational culture to suit autistic employees, rather than changing the employee to fit the culture.
— CRAE (@CRAE_IOE) May 2, 2019

A4 small shout out for some fundamental science @PWCentre looking at how sensory sensitivities are underpinned at the cellular and network level. I think this is a good example of how lab science can develop knowledge relevant to people’s lives wxperience #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A4: I feel really blessed to have had the opportunity to do participatory research on suicide and access to mental health care. Here’s a white paper I contributed to with @TheArcUS. #AutINSAR https://t.co/PsusjHBGAr
— Sara Luterman (@slooterman) May 2, 2019

A4: I'm happy for the efforts of @Sarah_NottsUni in reducing suicidality, and the efforts of @DrLaurenBF In improving quality of life across the lifespan #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A4 My research on autism and the neurodiversity movement provides evidence that activists view autism as a *complex* difference that requires support, and similarly that even strengths have *complex* effects that depend on various influences. @thinkingautism #autinsar 
— Steven Kapp (@drstevenkapp) May 2, 2019

A4: I’m hoping to improve the healthcare experiences of autistic adults and improve the knowledge, skills and confidence of health professionals working with autistic adults... all in collaboration with autistic adults themselves. #AutINSAR
— Anna Urbanowicz (@aurbanowicz) May 2, 2019

A4: My research includes creating student communities for autistic students in post-secondary education. Hopefully, the students I’m working with and learning from are also benefitting! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

Today during my @IllinoisLEND presentation, a social work educator told me that they had previously taught/required person-first language, but my research changed their perspective! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

#AutINSAR
A4
Research into methods of learning, eg AIMS in South Africa, an alternative to ABA, could be researched more internationally and implemented in schools where developing autistic children using their interests and abilities is preferable to attempts to "cure" them.
— Rowan (@Rowan55388496) May 3, 2019

Q5: Which co-occurring conditions need more research attention, and why?


A5 Sleep disorders have a major impact on our lives, and there is minimal research about it. There is also little research about effective treatments for depression and anxiety in autistic people, particularly for people who don’t have access to communication. #AutINSAR https://t.co/YXfAIEMvWO
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A5: -cPTSD and trauma in autistic people specifically, with a focus on developing effective treatments. Very common.
-Ehlers-Danlos Syndrome—common, complex, underdiagnosed and poorly treated.
-Sensory and auditory processing disorders.
-Sleep. #AutINSAR
— #AutChat mod (@autchatmod) May 2, 2019

A5 hypermobility, eating disorders, sleep problems, seizure disorders...
eating disorders are especially important to me personally bc i haven't found treatment that understands how my experience/needs might differ from an allistic person w an ed #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A5. Spectrum published an explainer on co-occurring conditions and #autism: https://t.co/p3gdJQ1iss More than half of #autistic people have four or more other co-occurring conditions. #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A5. One of our most recent features addressed the overlap between #autism and #OCD: https://t.co/xiQeCQYT48 #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A5 With me, it’s #OCD. I was diagnosed with OCD in grade 6. This comes along side my autism. I think that more focus on mental health and access to it is needed. #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

Q5 co-occurring conditions that need more research: EDS; many autoimmune conditions individually and as an overall phenomenon; anxiety, depression, and suicidality. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A5: Number one has to be autism and learning/intellectual disability. This really important study from Ginny Russell and colleagues showed that, of research published in autism journals, 94% of participants did not have an LD/ID https://t.co/0KWPfKqekF #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A5: Also, research into non-autistic people's (especially professionals who work with autistic people) understanding the difference between autism and co-occurring conditions, e.g., lots of people think anxiety is an intrinsic part of autism #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A5: Agree with @LorcanKenny. At @CRAE_IOE, we run a research-schools partnership with autism special schools in London. Most researchers who approach these schools about research only want to include children without LD/ID... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

I had to push back against this thinking during my dissertation-some pushed for autism only, I pushed for including co-occurring conditions. I won and included kids with various co-occurring conditions such as LD and ADHD.
— Andy Colombo-Dougovito (@amcdphd) May 16, 2019

A5: Sleep issues, eating disorders, and Ehlers-Danlos in general.
Ehlers-Danlos and myotonic muscular dystrophy type 2 personally. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A5 this is a bit of a spinoff, but i'd also like to see research that works towards increasing provider competence at differential diagnosis
SO MANY of us get misdiagnosed and it leads to ineffective or even harmful treatment #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A5 #AutINSAR #INSAR2019
Sleep deprivation - it reduces our ability to cope or strength of will to stay - it’s also very human thing not to cope without sleep - #Ptsd makes it worse
Links 2 mental health issues and suicidality as we get ‘2 tired’ to carry on #AutisticSimplyHuman
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A5: Mental health conditions. All of them. Ehlers-Danlos and hypermobility. GI disorders. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

A5 a co-occurring condition that is NOT a disease or disorder but needs much more research: gender divergence. Not on causation of the high rate of intersection, but research that helps us live better lives, get past gatekeepers, be supported in our challenges, etc. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A5 Translational research. Sometimes there is research being done in an area, but it never reaches autistic people because it isn't being translated into practice, or it is but almost no one is doing it, or it's being translated in ways that don't respond to needs. #AutINSAR
— theories of minds (@theoriesofminds) May 2, 2019

A5: Also as well as focusing on co-occurring conditions separately, looking at how multiple conditions work together (or not).
It seems very rare for a person to be autistic and one single other diagnosis. #AutINSAR https://t.co/x5dZti1hwm
— Bethan Davies (@BethAnDavies28) May 2, 2019

#autINSAR A5. Anxiety!! Anxiety is common in autistic people, yet there is a lack of accepted and reliable autism-specific measures of anxiety. Especially for autistic adults.
— CRAE (@CRAE_IOE) May 2, 2019

In case anyone is interested in #anxiety and #autism, we have a deep dive into the overlap here: https://t.co/EA8fRLKx55 #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A5 I want research on the co-occurrence of Tourette’s syndrome and Autism. So many clinicians assume Tourette’s symptoms are simply an intrinsic part of autism and not a separate condition. Eductional methods alone 4 autistics and people w/ Tourette’s are at odds w/ one another #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019

A5: Connective tissue disorders, sleep disorders, eating disorders, substance misuse disorders. Epilepsy. anxiety and mood disorders yes, but with a big focus on trauma and PTSD, and how to recognize them, especially in ppl w/limited language. (1/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A5: Apraxia and movement disorders, including catatonia. Specifically--to what extent CAN these actually be distinguished from autism? If most autistic people have some degree of apraxia, as research is suggesting, does it make sense to call that co-occuring? (2/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A5: Finally, intellectual disability. Not even just as a co-occuring condition: it's just blazingly obvious that most researchers have never met a single person with an ID. It's causing some pretty embarrassing, highly preventable problems. (3/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

Seriously if you’re doing research and haven’t met anyone with the conditions you’re researching there’s a problem. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A5. Depression. There’s some good research coming out about this lately, but it still feels very underexplored. #AutINSAR #INSAR2019 https://t.co/VnOxoouDyc
— codeman38 (@codeman38) May 2, 2019

A5 high trauma rates. Are Autistic people more likely to be traumatized? How can we lower trauma through the lifespan? Can we design and implement trauma-informed Autistic access? Are there additional qualities to Autistic trauma that we should understand? #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

Researcher Katherine Stavropoulos is digging into #PTSD and #autism in children on the spectrum. More on her research here: https://t.co/8EEsk8LDBH #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A5: I think we need to address health inequalities for autistic people by understanding physical health and experiences of accessing physical health services. #AutINSAR #INSAR2019 https://t.co/rhoegXdWkv
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A5: it’s not exactly a co-occurring condition but we definitely need to know more about older autistic people including:
-Cognitive decline
-Physical health
-Dementia risk and resilience
-Preferred later life and end-of-life care#AutINSAR (tweeting again with hashtag)
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A5: Epilepsy, Ehlers-Danlos, depression. Depression is the greatest hindrance to #ActuallyAutistic well-being, in my opinion. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A5 so many: suicidality, EDS, sleep disorders. I'd also love to see work on how autistic people measure and understand their own health. It's hard to benchmark what you experience if descriptions are based on non-autistic understanding and perception of pain/discomfort #AutINSAR
— Cat Hughes (@naturetable) May 2, 2019

Not that I really know what *is* getting research attention right now, but +1 re: pain perception. I've spent so much time questioning whether certain things I experience even are pain or not, to say nothing about trying to rate them on a 1-10 scale.
— Minty (@minty_things) May 2, 2019

A5: the overlap between autism and epilepsy, especially in autistic people with learning disabilities urgently needs more research attention #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A5: ID is number 1 IMO, because the entire concept of so-called “functioning” labels begins there. Certainly more attention should be paid to sleep issues, EDS, and epilepsy. And can we get an accurate read on the causes of premature death? #AutINSAR #INSAR2019 https://t.co/XVCB92aquS
— Steve Lieberman (@stevemlieberman) May 2, 2019

EDS [Ehlers-Danlos] POTS [Postural Orthostatic Tachycardia Syndrome] dyspraxia apraxia ADD/ADHD and misophonia #AutINSAR https://t.co/xxu9xJhTOK
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

I’d like to see more research on epilepsy, including management and also access issues and public awareness #autINSAR
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019

Alexithymia, and how that interacts with social deficits
— ya boi frankles (@wheeflop) May 19, 2019

The overlap of Autism and Disorders such as Anxiety/Depression/ADHD. Anxiety and Depression in both Chemical Imbalance and borne from trauma related to being autistic in an intolerant/insufficiently-equipped environment (at home, school, work, etc)#AutINSAR #INSAR2019
— Sneaky Bunyip (Cannon Fodder Comics) (@sneakybunyip) May 2, 2019

A5:
-Mental Health
-PTSD/C-PTSD
-Insomnia
I think it’s pretty easy to make the case for co-occurring conditions people can see but advocates can struggle to make clear co-occurring mental health/invisible ones.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019

Sleep, delayed pain receptors, lack of temperature regulation, epilepsy, sensory issues
— Edge of The Playground (@PlaygroundEdge) May 3, 2019

A5
Depression, suicidal ideation and suicide attempts, anxiety, because of the negative impact these have on quality of life. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019

Q6: What are some concerns of minority autistic community members that don’t get enough research attention? 


A6: intersectionality in general is almost entirely disregard in autism research and often practice.
Eg the vulnerability of black autistic people in relation to police violence
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A6 Autistic people of color often face discrimination when it comes to obtaining a dx, supports, or accommodations, especially as adults. Disparities in special education, the school-to-prison pipeline, and police violence are all relevant issues that merit research. #AutINSAR https://t.co/pegqCsMy5Z
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A6 disparities in access to diagnosis and accommodations, systemic inequalities that impact quality of life, increased risk of harm when not hardcore masking #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A6 actual data on non-binary #ActuallyAutistic communities in many fields of research!
— Louise 脗没 (@au_louise) May 2, 2019

Can we please yes? Saw a paper on gender and sexual diversity that still classified everyone as either a man or a woman while some responses indicated they were non-binary... #AutINSAR https://t.co/5zejnfvTBD
— Alyssa (@yes_thattoo) May 2, 2019

A6: I did a survey of over 1000 parents' experiences of their children getting an autism diagnosis - 95% of the respondents were White (https://t.co/CGBQT3Qz1s). We need to do more to include the views/perspectives of minority ethnic groups in research #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A6: We subsequently did some work (led by a brilliant Somali student, Amal Hussein) with Somali parents of autistic children, highlighting some specific issues to the Somali community: https://t.co/rKkph6crYJ #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A6 Seniors! Where is the data on #ActuallyAutistic that are aging? #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

I believe many #ActuallyAutistic minorities are frustrated (in Canada) such as First Nations for example with being under federal jurisdiction and not being able to get resources for autism which are mainly in a provincial setting. That means they don’t have access. #AutINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

Q6 Police violence against disabled people, particularly against disabled people of color. Undue gatekeeping against Autistic transgender people seeking medical transition. Zero research on anything ever that recognizes non-binary transgender people. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A6. Minority families often miss out on access to therapies or get left out of #autism research — an ethical failure. Back in 2016, we featured some of the initiatives underway trying to address the issue. https://t.co/LkyAlydlLI #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A6: shout out to @AutisticaUK who have a call at the moment for research with underrepresented groups #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A6: More info on this call for proposals for UK-based researchers can be found here: https://t.co/VWaqD49AqK #AutINSAR https://t.co/BG2MPpgS5E
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A6: Police violence, and the actual efficacy (or lack thereof) of police training programs. How to scale good supports to families with different resources or cultural contexts. How to identify autistic folks trapped in the criminal justice system. (1/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A6 There's research about how parents of color flag different things about their kids development than white parents--and are often less scared. This is framed as a deficit and it really shouldn't be! What can we learn from these families? (2/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A4 Anything about adult diagnosis disproportionately benefits marginalized communities, since we are diagnosed later and less often. Same with issues like homelessness, and other ways we fall through the cracks. How can you find us, and how can you help? (3/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

A4: Finally: why are we so gay? (4/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

:D SUCH A THING
(although, i am personally curious about the why but am also afraid if researchers latch onto this it will turn into "and how can we stop it") #AutINSAR https://t.co/STxNyrrw2B
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

Considering that in a study I read noting more autistic people in a bunch of trans kids, at least one autistic trans kid had designated-gender-appropriate behavior as a therapy goal, that’s already a thing. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

Relatedly: There seems to be a *lot* of overlap among autism, asexuality, and nonbinary gender, and I am genuinely interested in seeing more research on why that is. #AutINSAR https://t.co/llkYDz81Z8
— codeman38 (@codeman38) May 2, 2019

A6: I don’t know the answer to this but there seems to be fewer opportunities for minority autistic community members to safely speak up and say what their concerns are and be listened to #AutINSAR

Looking forward to our Equality, Diversity and Inclusion project @AutisticaUK https://t.co/kvvPYOaldW
— Bethan Davies (@BethAnDavies28) May 2, 2019

A6: Yes! And the problem is, we design all of our autism services around the views of the majority, and then wonder why minority groups don't engage with them...sigh! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A6: ways to successfully include minority autistic community members in autism research, the first and easiest step is to consistently report the breakdown of the socioeconomic status, gender, race and ethnicity of participants #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A6: Are there even any autistic minority community members here on the chat? If not, that's a lowdown dirty shame. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A6 I see many Autistic People of Color say that the advice generally given to Autistic people would get them or their children killed. There needs to be more understanding of the intersections that lead to such social injustice and ways to address it. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A6: Participatory research needs to make sure multiply marginalized autistic people are part of the work. I see a good bit where it’s autistic white boys on computers, and that’s pretty narrow. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A6: we absolutely need research on autism and gender identity and sexual orientation.
Developed a lovely proposal with @SedgewickF to look at co-creating relationship and sex ed materials for autistic children and young people. Not funded. 馃槙
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A6 How to help Autistic adults who have been institutionalized or otherwise isolated from the larger community become aware of their rights and aware of the ways to solicit support and assistance in taking charge of their lives. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

#autINSAR A6. @CRAE_IOE's @LauraMayCrane did a survey with over 1000 participants. A weakness of the sample was a lack of ethnic diversity, with 95% of participants describing themselves as white. https://t.co/XPEp5iQdhW
— CRAE (@CRAE_IOE) May 2, 2019

A6: Yes, I did - thanks for the HT @CRAE_IOE! And the problem is that we use our knowledge from unrepresentative samples to design services and supports for autistic people...then we wonder why minority groups don't engage with services and supports 馃檮 #AutINSAR https://t.co/QB6Jcqer4v
— Laura Crane (@LauraMayCrane) May 2, 2019

A6: Lots of stigma amongst minority ethnic groups. There is great work by @NuraAabe that is addressing this: https://t.co/ZHFNqPQgg5 #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A6: LGBTQIA+, trans, and non-binary identities. The impact of intersectionality on access to appropriate services and supports for those who are multiply marginalised. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

A6: In general, more research focused on autistic people of color and autistic women, girls, and non-binary folks! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

One of my future dream projects is to examine how gendered social expectations of young children relates to autism symptom presentation. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

A6:
Access to diagnostic resources
Barriers to participation in political venues for #autistic adults
Development of sexuality in #autistic brains#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 3, 2019

#AutINSAR
A6
Not being diagnosed until adulthood, being misdiagnosed with other conditions... and again... and again. Being considered rude or hard or cold because you don't want to be touched, or don't always want to talk. Loss of trust in medical professionals.
— Rowan (@Rowan55388496) May 3, 2019

Q7: What are some barriers that make autism research results less accessible to #ActuallyAutistic people (cognitive, financial, etc), and how can we reduce them? 


A7: Perhaps TPGA can have occasional chats between #ActuallyAutistic autism researchers and the #ActuallyAutistic community #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

A7 Accessible language! Use layman terms whenever possible for your diverse audience. #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

Autism in Adulthood does lay summaries! Several people have told me they were glad to see it because it made it easier to understand the main points. #AutINSAR https://t.co/02SWBCg6SR
— Alyssa (@yes_thattoo) May 2, 2019

A7: researcher workload is a big issue. I know it seems whingey - tenured academics are an incredibly privileged bunch. But the skills that get them to that place - doing good research, sharing it with people - quickly get lost in the sheer quantity of tasks expected.#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A7We need more accommodations for #ActuallyAutistic people financially to go to participate in research projects, for transportation, and other quiet time, and allocative resources. If they want our accurate voices they need to make space and understand our struggles. #AutINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

A7 allistic researchers seem to still be pretty insular such that i'm not sure it occurs to many people that the language they're using or the paywalls they're publishing behind are going to inhibit #ActuallyAutistic people from accessing their research #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

A7 #AutINSAR #INSAR2019

Paywall
Paywall
Paywall
Paywall

Autistic people can be often badly hurt by poor engagement
Financial and ideological self interests of some funders

Hidden agendas
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A7 oftentimes academics are welcome to share their published studies person to person, but #ActuallyAutistic people might never have been informed they can ask for that! #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019

There’s a reason I remind people they can ask me for my papers! On that note, you can ask me for my papers.

And most of my paywalled writing is on https://t.co/1F3s5xhPlb as well. #AutINSAR #ActuallyAutistic https://t.co/g1cNhKHAUW
— Alyssa (@yes_thattoo) May 2, 2019

Autism in Adulthood does lay summaries! Several people have told me they were glad to see it because it made it easier to understand the main points. #AutINSAR https://t.co/02SWBCg6SR
— Alyssa (@yes_thattoo) May 2, 2019

A7. Researcher @bhismadev wrote for us about the need to encourage public engagement from researchers at their research institutions. https://t.co/nGLtcNqTDl #AutINSAR
— Spectrum (@Spectrum) May 2, 2019

A7 Making research, results, and the process of consulting on research cognitively accessible is crucial to making sure autistic people with all kinds of support needs, including those with ID, are weighing in on research priorities. #AutINSARhttps://t.co/xWlzaeEzgX
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A7 In the DD policy world, ASAN has seen a surge of interest in Easy Read and plain language materials from orgs starting to realize that the people they serve should be able to understand their resources. Would love to see similar access measures in autism research #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A7 And of course, #INSAR2019's backlash, among autism researchers, against the idea that autism research spaces should even *attempt* to be inclusive of and accessible to autistic people shows how far we have to go here. #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019

A7 the sensory room is not sensory friendly @AutismINSAR. The natural sunlight, noise of the fan, the cooks and workers clanging, and the lack of instructions on the use of the room. #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

A7: the results of research is often only described in scientific papers which might be behind a paywall and written in scientific language. To change this we must get universities to incentivise researchers to do public engagement (i.e., make it a promotion criteria) #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

You never have to pay. Ask you library to get the article for you.
— (((Lisellecae))) (@Lisellecae) May 2, 2019

That’s great if you know about it, but without being told that most people don’t. I worked at a university until recently and yet still just quit out of pages with paywalls because I didn’t know how to do that
— ya boi frankles (@wheeflop) May 3, 2019

A7: the language and format that the research is presented in.
Summarise in lay-terms so that the people the research is about can easily see if it is relevant and the top level results before committing to a 30 page opaque report #AutINSAR https://t.co/3MFl4Xp7ML
— Bethan Davies (@BethAnDavies28) May 2, 2019

A7 some barriers: service providers who don’t keep up with the research, research hidden behind paywalls, media sensationalism of mis-understood research, research not getting written about clearly for those who can’t understand statistics and specialized language #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A7.
-Paywalls. So much paywalls. Open access or at least willingness to share papers would help immensely.
-Papers filled with jargon, with no lay-friendly abstract/summary available. (In some cases, not even accessible to academics from other disciplines!)#AutINSAR #INSAR2019 https://t.co/ln7nFwE6JH
— codeman38 (@codeman38) May 2, 2019

A7. I have a graduate degree in computer science, and some of the bio/psych posters that I’ve seen from past INSARs were completely incomprehensible to me due to unexplained field-specific jargon. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019

A7: Researchers who don't want us in the room when they're talking about us. Researchers promoting myths and stereotypes about self-advocacy. Researchers throwing a fit over accessibility. Researchers talking about us like zoo animals. I can go on... #autinsar
— Julia Bascom (@JustStimming) May 2, 2019

#autINSAR A7. Language and visuals! We think its important to ensure that evidence-based knowledge is translated, so that it can have meaningful impact and make a real difference to people’s everyday lives.
— CRAE (@CRAE_IOE) May 2, 2019

A7: Researchers often assume that we know how autistic people want to learn about research - we need to do more to find out how best to share research findings then focus on prioritizing that (do one thing well rather than lots of things badly!) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

A7: Research (and calls for research, which affects publishing) are really jargony. Even if you’re just in a different subfield it can be hard to follow!#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019

A7 Translation of research findings in an accessibly way. The expense of access. Triggers in research that may not be acknowledged #AutINSAR
— Cat Hughes (@naturetable) May 2, 2019

#AutINSAR er....conference costs?
— Dr Brett Heasman (@Brett_Heasman) May 2, 2019

A7 some ways to reduce those barriers: hire more cognitive interpreters to explain research clearly and accurately for the general public, the media, etc. Support open access academic publishing (our taxes support science, we have a right to be able to read it.) #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019

A7: I think researchers often use terribly offensive language when talking about autism (abnormal, deficit, impaired) - this makes research inaccessible (I cringe at my old research articles where I used words like this...I'm trying to be a better ally now!) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

As an early career researcher (some 10-15 years ago), I copied phrases I read in other research articles (which I now feel shamefully embarrassed about). Change needs to come from the top. Plus, it's 2019 people!!! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019

Researchers ignore everything I say that doesn’t fit their preexisting narrative about us. Speaking from experience. #AUTINSAR https://t.co/5nb6ZFPNSn
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

A7: Accessible language - so many “lay” summaries are NOT lay. Paywalls, obvs. But also topics researched, and the way research is presented. Research so confronting that it triggers meltdown is NOT accessible. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019

A7: Talking about autistic people in dehumanizing terms, and not just about our disability. Reading about trans autistics, racialized autistics, autistic women in scientific literature can expose you to transphobic, racist, and sexist language real fast. #AutINSAR #INSAR2019
— Vivian Ly (@viv_ly_mw) May 2, 2019

A7: #AcademicAbleism is a huge barrier to critical, autistic-led autism researcher. Making higher education and academia more accessible is at the center of my work. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019

I think my biggest barrier to conferences is I have a huge amount of trouble recognizing people and if I do recognize people, I tend to get stuck at the joining/starting a conversation stage. #AutINSAR
So I guess if you see me, say hi!
— Kayden Stockwell (@KaydenStockwell) May 2, 2019

A7: Besides paywalls I think the biggest barrier is the lack of promotion and advertising of self-advocacy communities by mainstream existing support infratructure, autistic people have to do their own research to know organizations like @autselfadvocacy exist.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 3, 2019

•Academic-only release of information (financial (f), cognitive (c))
•General population releases written for a parents-and-educators audience (c)
•Lack of peer review from qualified readers who are #ActuallyAutistic (c)
•Paywalls (f) and low information literacy (c) on...
— Rebecca (@beccajacket) May 3, 2019

...how to request paywalled articles through one’s library (c).
•Inconsistent accessibly (practical (p)) and user experience (c) of library websites—some are really good, but others are at best confusing and at worst inaccessible. The info, not the staff once you reach someone.
— Rebecca (@beccajacket) May 3, 2019

But if you read my blurb, you’ll see I’m biased.
Oh! Last one: controlled vocabulary searches (e.g. Library of Congress subject headings) (c). They’re really good for collecting materials about similar subjects on the same results page, but preferred subject headings ...
— Rebecca (@beccajacket) May 3, 2019

Change slowly when they do change (fault the system not the catalogers). A lot of the terms are offensive to the population described (see: “illegal immigrants” as a subject heading), or were outdated for decades before change (May link examples if you like).
— Rebecca (@beccajacket) May 3, 2019

The language of subject headings is historically not written by stakeholders in the subject communities, and the process of changing subject headings involves replacement rather than networking (unless you’re AO3).
— Rebecca (@beccajacket) May 3, 2019

#AutINSAR
A7 Financial aspects. If not a professional, you most likely do not have access to journals and research paper unless they are freely accessible.
Patronising professionals who believe in leaving treatment decisions for yourself or your children to those who know best.
— Rowan (@Rowan55388496) May 3, 2019

Q8: Any topics we’ve missed that you’d like to discuss? 


A8: Exploring the phenomena of gender variance in the #ActuallyAutistic population without trying to fix it. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019

I think I say this ever year but I worry we in this chat are in an echo chamber and not reaching the people who REALLY NEED TO HEAR THIS STUFF #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A8: I've mentioned it already but I am like a broken record so happy to repeat the need to focus on systemic change to how autism research is done to make sure it is reproducible #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019

A8: a major barrier to good participatory working is that university Human Resources protocols are just not helpful when it comes to including paid autism community representatives in research. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

A8 ah what else? Apparently if we are 5% of 2500 attendees, I wish I'd know how to meet all of these wonderful #ActuallyAutistic people. #AutINSAR
— Louise 脗没 (@au_louise) May 2, 2019

A8 #AutINSAR #INSAR2019
Some researchers need to see us as human and holistically plus see where all these research issues fit in the bigger picture of our narrative

If it’s about autistic people living fulfilled lives

then It’s about us being #AutisticSimplyHuman
— Flow Observatorium (@ObservatoriumF) May 2, 2019

A8: making autism research globally relevant is a major issue. 80% of autism research is done in 20% of countries. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019

Has anyone mentioned autism and pregnancy yet? #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019

No but a thing I’ve been wondering about is WHY is autism correlated with breech birth. (Are autistic pregnant people more likely to have their kids present breech?)#AutINSAR https://t.co/1gxEZeF4Lj
— Alyssa (@yes_thattoo) May 2, 2019

Here's the needed agenda:
#1-Work to make life better for actually autistic people.
#2-If you have a problem with #1, get the fuck out!
Simple.— Randy Germain (@ElBrutoBastardo) May 1, 2019

#AutINSAR Not mincing words here.
Far too many researchers have a problem with #1.
They need to find a different line of work. https://t.co/qTrI66gFYz
— Randy Germain (@ElBrutoBastardo) May 2, 2019

#autINSAR A8. Making conferences more accessible to the autism community and young and old researchers (autistic and non-autistic).
— CRAE (@CRAE_IOE) May 2, 2019

A8 Let’s talk about our interests. If anybody wants. Mine is Military, Military history. Model building. #Military #Fitness #ActuallyAutistic #INSAR2019 #AutINSAR pic.twitter.com/33JOUrihmU
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019

We have a decent amount of evidence that being religious reduces anxiety and depression, and we also have research autistics are less religious. Can we make religion more accessible to have those effects on us?
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019

I think we should offer people purposeful involvement in their communities (which is what generates this positive impact in religious groups), without them having to believe in gods if they don't want to. (Also, I wouldn't be comfortable in organisations like the Catholic church)
— Unicorn Ball (@Semilocon) May 3, 2019

I think community helps, but there is a positive impact on mental health even compared to people involved in non-religious community groups. There are deeper factors like the realization of ultimate meaning found in God. Religion, if done well, provides both community and meaning.
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019

#AutINSAR
A8 Correcting common misconceptions about autistic people - a million carbon copied robots who are somehow both emotionless and suicidal, do not understand any social norms whatsoever and have no empathy. Also, that all parents of autistic children will get divorced.
— Rowan (@Rowan55388496) May 3, 2019

Talking about being mindful of Stigma, this is a continuous problem even in research. #ActuallyAutistic @AutismINSAR #AutINSAR #AutismINSAR #AnAutisticAtINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 3, 2019

Addenda


Cats have been mentioned! :) #AutINSAR pic.twitter.com/dTXgmlulW2
— Flow Observatorium (@ObservatoriumF) May 2, 2019

[image: Tabby cat with an embroidered felt Cheshire Cat
head stuck in front of the tabby's face.]
Je vous lis tous. Merci de vos partages. 馃槏 Une #ActuallyAutistic non anglophone de Montr茅al. #INSAR2019 #AutINSAR #Autism #Autisme #Neurodiversity #Neurodiversit茅
— Neurodiversit茅 Art (@LucilaGuerrero_) May 2, 2019

[I read everything you shared here, thank you. 馃槏 A non-English #ActuallyAutistic from Montreal]

@AutismINSAR #AUTINSAR #INSAR2019 #ActuallyAutistic researcher attendee with a suggestion to make this a scent-free event...PLEASE (i.e., cologne, perfume, eating strong smelling food in meeting spaces). And if you’re following this # and in attendance please take note
— j脗cq没elyn (@fedej44) May 3, 2019

An important, community-cleaving debate at #INSAR2019 and #AutINSAR: why do so many #ActuallyAutistic people prefer cats over dogs?

I jest. Actual convo:
“Yay cats!”
“Yay dogs”
“Animals are unpredictable!”
“…and all these opinions are fine!”

image: black-and-white cat in a box.
[image: black-and-white cat in a carboard box.] 
pic.twitter.com/63WLihBmsa
— Thinking Person's Guide To Autism (@thinkingautism) May 11, 2019

Notes


We removed the original Twitter formatting as this many embedded tweets takes forever to load, plus are challenging for many of our community members to parse. If you want to see any tweet in its original context, please click on the date link (e.g., "May 2 2019") at the end of its entry.

Also, please know that some participants have private Twitter accounts. For this reason their comments, though valuable, will not be included here.

AutINSAR is a partnership between our team at Thinking Person's Guide to Autism, and The Autistic Self Advocacy Network (ASAN), NOS MagazineAutism Women and Nonbinary Network (AWN Network), AutChat, and We Are Like Your Child. This year we welcomed new partners Flow Observatorium and Autistics 4 Autistics Ontario.