Wednesday, April 26, 2017

Elizabeth Bartmess Interviewed on autchat, Autistic Community, and Autism in Fiction

Elizabeth Bartmess runs the autistics-and-cousins autchat discussions on Twitter, and also writes and critiques autism-themed fiction. We talked with Bartmess about why autchat matters, sometimes in surprising ways, and also about why "'Autistic character learns empathy' is the character arc I most wish would go away."

image: photo of a white person with short light brown hair and glasses, smiling
Elizabeth Bartmess
[image: photo of a white person with short
light brown hair and glasses, smiling.]
Thinking Person's Guide to Autism: Tell us about autchat. What is it, exactly? 

Elizabeth Bartmess: Autchat is a Twitter hashtag by and for autistic people and "autistic cousins"—people who have similar experiences due to other disabilities like hydrocephalus, cerebral palsy, ADHD, etc. We welcome people whether they are formally diagnosed, self-diagnosed, or wondering whether they might be autistic or similar.

We have weekly hour-long chats on our experiences, with topics such as  accommodations, burnout, and sexuality. During a chat, the moderator asks 4-5 questions and participants answer them. We post the questions online ahead of time for people who need more time to think, and people can chime in with answers any time during the week. Outside of chats, people may also use the hashtag to ask questions or post information of interest. We save transcripts of the chats to our website, to help keep a record of our collective knowledge.

The chats are Sundays 4pm Eastern, and the website has information on how to participate. We ask people who are neither autistic nor autistic cousins to refrain from posting on the tag, but everyone is welcome to read along or to check out the archives.

TPGA: How did autchat come into being? Was it a collaboration or a solo project?

Bartmess: Autchat came out of the autistic community on Twitter in February 2015. I'd been on Twitter for about a year then, and had met a lot of other autistic people and been having great conversations with them. Twitter is a very ephemeral medium, though—you have a conversation, it scrolls off your timeline, and you stop thinking about it. And if it's just between you and someone else, people who don't follow both of you won't see the conversation on their timelines. So I asked whether other people would mind if we started tagging some of these conversations so other people could find them by searching for the tag.

A number of people were interested. We came up with the #autchat tag, decided to try weekly chats, and collaborated on planning. The primary people involved back then were me, @AskCisco (who had been thinking along similar lines), @Ask_anAspergirl, and @erabrand, who also did our website. For a while, Cisco also ran a second autchat session on Sundays, where we revisited previous topics.

We've now been running for over two years have have had over a hundred and sixty chats on more than eighty topics. Some other projects have also come out of people who either met through autchat or were involved in planning it, such as Autistic Flappy Hour, a podcast run by autchat co-founder @AskCisco and two other autchat regulars; and the #AutismMeans hashtag series, run by me, @FilmSpectrum, and @rsocialskills. @neurocouture, an autchat participant, has also run a number of Twitter chats on autistic burnout on the #AutBurnout tag.

TPGA: Can you tell us about some specific instances in which you've seen autchat make a difference in someone's life, or in which you've heard it helped a person through a tough spot?

Bartmess: Specific instances blur together in my mind because there have been so many of them! For some people, it's their first foray into autistic community. Many people have said it's helped them with self-understanding, self-acceptance, and coping skills. Other people have said it's helped them get through their diagnostic process, or help make sense of things after a diagnosis. I know many people make friends through the chats and develop a sense of belonging to a community. I've also seen people say autchat has helped widen their understanding of what it means to be autistic. There are also some good stories in this post that @AskCisco wrote about autchat's origins.

TPGA: What are some examples of autchat scenarios that surprised you, or widened your understanding of other autistic people's experiences?

Bartmess: I was surprised by how central stimming is for many people, both with respect to coping and with respect to social experiences and the need for acceptance. My own experiences have centered primarily on difficulty with social scripting and figuring out how to respond to social cues—not so much now but certainly up through my early thirties—and I thought that would be more universal than it was. I also wasn't expecting sensory issues to be as salient a feature of many people's experiences as they are.

Another thing that surprised me was experiences with gender and gender identity. Before becoming involved in Twitter's autistic community, and in autchat, I hadn't realized how common it was for autistic people to be trans and/or nonbinary, or gender non-conforming.

TPGA: Are there any autchat topics you haven't broached yet? If not, why?

Bartmess: I have a list of almost twenty topics that have been suggested that we haven't covered yet (two of which I've thought of while answering these questions!), so the most common reason to not cover topics is just that I haven't gotten around to them yet.

There are some topics I would particularly like to cover, but haven't attempted. The biggest one is chronic interpersonal trauma, specifically abuse and bullying. I write most of the questions for the the weekly chats, and I try to write them so that participants can come up with useful things to take away. I don't know how to do that for chronic interpersonal trauma, in part because what we need often doesn't exist. There's very little effective treatment for chronic trauma specifically, and the treatments that have been developed are not widely available and don't take into account autistic and similarly neurodivergent people's specific needs and vulnerabilities, even though we experience abuse and bullying at high rates.  My worry is that because what our community really needs—effective and widely available treatment and support—largely aren't available to us, we'll wind up at the same place we started from at the end of the chat, and possibly in more distress.

There are also some topics I would like to run where I don't have the relevant personal experience to write good questions. We've had topic requests for co-occurring conditions like eating disorders, personality disorders, plurality, and psychosis. I'd also like to have a chat on race and ethnicity and how that affects experiences of being autistic or similar. I've been looking for volunteers to do these for a while, but have not had any success yet.

I'd also like to have a chat on autistic cousins and autistic communities. Communities formed by autistic people can be quite strong and sometimes also insular. That can be hard on neurodivergent people who have a lot in common with autistic people, but who are not necessarily invited to autistic communities and activities and may not feel comfortable joining in even when they are. I haven't had that chat yet because autchat's participants are almost always autistic, and the chat would need to primarily involve autistic cousins speaking and autistic participants listening. I don't have the cross-community connections to network for that and am not very good at reaching out. (I am open to collaboration, though. If someone who is reading this is a disabled person who shares significant similarities in experience with autistic people and would like to develop a Twitter chat or chats on this, either for autchat or as a separate chat, DM the mod account on Twitter at @autchatmod or email autchatmod@gmail.com.)

TPGA: How do you think people who aren't themselves autistic can benefit from reading the autchat archives?

Bartmess: Some of the benefits for non-autistic people are the same as for autistic people: A better sense of autistic people's similarities to and differences from non-autistic people, and a better sense of autistic people's similarities to and differences from each other (as the saying goes, if you've met one autistic person, you've met one autistic person). Autistic cousins may get some of the same benefits that autistic people do, by seeing experiences they personally identify with, or ideas for new coping skills.

I think many people who read the archives, whether they are autistic or not, will be surprised by the range of topics and the many ways those issues affect our lives. For example, many people don't know that sleep difficulties, or differences in pain perception and expression, or difficulty eating, are common for autistic people, even if we know those are issues for ourselves personally, or for an autistic person we know. Popular representations of autism often focus on a limited number of topics, and have a narrow scope even for those topics.

TPGA: You are also a fiction writer, and a contributor to Disability in Kid Lit. What are some stereotypical autistic character arcs you wish would go away?

Bartmess: "Autistic character learns empathy" is the character arc I most wish would go away. There's a common and inaccurate belief that autistic people don't have empathy. While some autistic people do describe being lower in empathy than neurotypical people, it's very common for us to have painfully high levels of empathy. It sometimes looks like we have less empathy because we have difficulty intuiting how a given person wants us to express that empathy, and asking outright can sometimes make people angry. It's also hard to enact empathy when we're overstimulated or anxious or overwhelmed, and our energy is so taken up by the immediate situation that we have nothing left to give.

These are both situations where empathy and understanding from other people can help us get to a position where we can return that empathy and understanding. But it's common for us instead to hear that we're not empathic enough, and if we really cared about other people, we'd do what they want. Hearing that—whether in real life or in fiction—is frustrating, not just because it's inaccurate but because it means nobody gets what they what! And that belief—the belief that we lack empathy—is also sometimes used as justification for treating us badly.

Another character arc I would like to go away is one where we learn to "push through" or learn to tolerate things that, in real life, are either not good ideas for us to try to push through, or are not actually things it is possible for us to learn to tolerate. This is a variation on a larger theme where character growth is shown as becoming more neurotypical. That's depressing to read because, while autistic people continue to learn skills throughout our lifetimes, we don't become neurotypical; what looks like becoming more neurotypical / less autistic is often compliance with expectations that we act neurotypical regardless of the cost, and the cost can be very high.

A third character arc I'd like to go away is actually not a character arc at all—it's the absence of one, where an autistic secondary character is included in a story so that neurotypical characters can show they're good people, or included to provide conflict for other characters to work through (often in the form of being embarrassing to other characters in front of their friends).

When I wrote that article you linked to in the question I was thinking of things not to do—and I think if I wrote it again I'd focus more on arcs I would like to see, or like to see more of. (I still like that article and I'm glad I wrote it, but I wish I'd included more positive things.)

One thing I'm struck by in fiction is the rarity of autism-related arcs that are very common in real life. For example, realizing you are autistic, or being diagnosed, as a teen or adult, and re-evaluating your life in light of that. Fiction often shows us as already diagnosed (and in fact I can only think of one major exception in kid lit—Rogue, by Lynn Lachmann-Miller, an autistic author, although there are some books that never identify us as autistic at all).

Another real-life arc is joining autistic community; many books have one autistic person and that's it, although there are some great exceptions, especially by autistic authors. Other real-life arcs include learning to better advocate for your needs and improving your self-care skills, and learning coping skills for things that don't show up in fiction much, like autistic inertia and other aspects of executive dysfunction, or motor issues.

All of those arcs involve the opposite of becoming more neurotypical, and in real life they often involve becoming more visibly autistic. So they don't necessarily look like character growth to people who haven't lived them, or who aren't on close terms with people who have. But they're some of the most important and helpful character growth we can have.

And, of course, autistic people go through character growth that isn't specifically about being autistic, and I'd love to see more of those arcs, too.

TPGA: Who is your favorite autistic character in literature, and why? What resources would you recommend for people who want good portrayals of autistic characters?

My favorite autistic character is Oscar from Anne Ursu's middle grade book The Real Boy, for many reasons. He has domains of competence and difficulty, and he has adventures that are not specifically or exclusively about being autistic—while still being portrayed as autistic throughout—and winds up being a hero. The book is very good at portraying his internal experiences, and some of his difficulties with social cognition are quite close to ones I had when I was younger.

My favorite resources for good portrayals of autistic characters are Disability in Kid Lit (which includes reviews of both good and less good portrayals), and Ada Hoffman's Autistic Book Party, which has a stronger focus on fiction for adults, particularly science fiction and fantasy. It includes novels, as well as many recommended short stories that are available for free online.

Monday, April 24, 2017

What Happens to Autistic People in Prison?

What happens to autistic people in prison? We spoke with Clare Hughes, the Criminal Justice Coordinator for the United Kingdom's National Autistic Society, about the unique experiences of and considerations for incarcerated autistic people. Clare has been leading on the NAS's work expanding its accreditation programme to police forces, prisons, and probation services. Note that while some discussed issues are UK-specific, many can be generalized.

caged
Photo © Dave Nakayama/Creative Commons license
[image: Prison cell bars, with the background cell itself slightly out of focus.]

Clare Hughes: We don’t know how many autistic people there are in prison in the UK: information about people diagnosed with autism isn’t collected routinely for the general population, let alone for prisoners, and many will be undiagnosed.

HM Young Offender Institution (YOI) and Prison at Feltham diagnose young people in the prison, if they are there long enough. In February 2016, they identified that 4.5% of their population had a diagnosis of autism, which they’d received either before or at the prison. It also requires main grade prison staff to refer prisoners they suspect are autistic.

From discussions I have had with prison governors, they don’t think that numbers of autistic prisoners are large, but the impact on the prison can be significant as they struggle to identify the best ways to support them. Some prisons are aware that autistic prisoners are spending—and often choosing to spend—extended periods in Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

The National Autistic Society is currently actively working with eight prisons, who have registered with Autism Accreditation. Autism Accreditation is a quality assurance programme that has been in existence for almost 25 years.

HM YOI Feltham in West London was the first prison to achieve Autism Accreditation in 2016, after we’d worked with them to develop the specialist Autism Accreditation Standards for prisons. We have since had over 30 prisons interested in Accreditation, following a letter recommending Autism Accreditation sent to all prisons in England and Wales by the then Minister for Prison, Probation and Rehabilitation, Andrew Selous MP. The Minister also asked us to look at developing accreditation standards for probation services which have done and these are currently being piloted. Following this work, we had police forces interested in the programme.

Thinking Person's Guide to Autism: Is there a sizable autistic population in UK prisons?

Autistic people can end up in the prison system, just like anyone else. Although the exact number of autistic people in prison isn’t known, in HMYOI Feltham in February last year, they represented 4.5% of the population. (Note this is an ever-changing figure, as people are released and others arrive.)

What is clear is that research has found that autistic people “represent some of the most vulnerable people in the offender population.”*

Prison governors have told me that, although the number of autistic prisoners isn’t high, they can have a significant impact on the prisons as staff struggle to identify the best ways to support them. Some of the prisons I have visited identify that autistic prisoners are spending, and even choosing to spend, extended periods in the Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

* Talbot, J (2008), No one knows: Prisoners Voices: Experiences of the criminal justice system by prisoners with learning disabilities and difficulties. London: Prison Reform Trust.

TPGA: Does the population the National Autistic Society works with include suspected but undiagnosed autistics?

Hughes: Our Autism Accreditation programme is designed to be beneficial for all autistic prisoners, whether they have a diagnosis or not. For a prison to be accredited, their staff will work with us to implement standards developed specifically for prisons across every area of their work, which will ultimately improve the identification and support of autistic prisoners. These changes include familiarising staff with autism, allowing autistic prisoners to use communal areas at quieter times and making reasonable adjustments to the building, such as creating areas with less clutter. The changes are all relatively straightforward but they can make a huge difference to the lives of prisoners and staff alike.

The development of the prison standards for Accreditation started in 2014 when the mental health team at HMYOI Feltham (run by Barnet, Enfield and Haringey Mental Health NHS Trust) asked if we would consider developing our existing Accreditation standards, which have been running for around 25 years. The prison had previously audited their mental health services against another audit tool, but felt that in order to provide the best outcomes for autistic prisoners, they required a specialist response and, most importantly, a whole-prison approach as autistic prisoners were affected by a wide range of issues, including the physical environment. We then worked together to develop standards relating to the custodial aspect of the prison, education mental health and primary care.

As part of this, we also looked at a thematic review that had been carried out by Her Majesty’s Inspectorate for Prisons and Probation in relation to the treatment of prisoners with learning disabilities and/or autism in the criminal justice system and incorporated their recommendations, particularly around improved communication, which will, of course, benefit to anyone with communication issues.

The then minister, Andrew Selous, heard about the work taking place at HMYOI Feltham and visited to learn more. Following his visit, he wrote to all prison governors across England and Wales, encouraging them to consider Autism Accreditation. Feltham has since become the first prison or YOI to be accredited, and the project last year won the Royal College of Speech and Language Therapists’ Sternberg Clinical Innovation Award. This was shared between project partners Barnet, Enfield and Haringey Mental Health NHS Trust (who provide the mental health services at the prison), the National Autistic Society (NAS), and HMYOI Feltham. We’ve also had another 30 prisons and YOIs contact us to express interest in Autism Accreditation and are currently working with eight of them, including Feltham.

TPGA: Do you know if the proportion of incarcerated autistics is similar in other countries?

Hughes: We are no aware of any definite prevalence data about any prison population, nor how this compares to the UK.

TPGA: Does being autistic affect one's chances of being incarcerated? If so, why?

Hughes: The vast majority of autistic people are law abiding and respect the rules of society. Indeed, in many cases, autistic people are unusually concerned to keep to the letter of the law.

But there are of course cases where autistic people, like anyone else, can commit a crime. There are also cases where someone's autism may have a bearing on their behaviour. For instance, autistic people can have difficulty understanding unwritten social rules or how the world works, which can leave them open to being taken advantage of by others (Autism Together have been running a campaign around this so-called mate crime).

Autistic people can also be misunderstood by professionals within the criminal justice system, which is something I’m trying to change in my work. There’s a tendency, particularly in relation to some serious crimes including terrorism and sexual offences, for criminal justice professionals to interpret ‘odd’ as ‘dangerous,’ which may bring autistic people into contact with the criminal justice system or to their behaviour being seen as more serious in its intent. For example, if someone commits an offence related to a special interest, they may speak about it in great depth and passion when asked, leading people to think they are cold and calculating. Likewise, many autistic people struggle with eye contact and this can be interpreted as having something to hide.

More and more professionals are starting to understand more about autism and the different ways autistic people may respond to situations. This should help prevent people’s behaviour being misinterpreted and lead to better responses to divert autistic people from offending, or improved programmes to help prevent further offending.

TPGA: What kind of problems do autistic people encounter in prison that tend to be specific to their disability?

Hughes: Autistic people can have extreme sensitivities to things like light and sound, so the often busy and loud prison environment can be a real challenge. Prisoners shout to other prisoners, prison officers shout to prisoners, prison officers shout to other officers, there is the sounds of keys jangling, heavy cell doors being banged, an almost constant smell of cleaning products, strong smell of food at mealtimes, and minimal natural light. All of these can be incredibly challenging for autistic people, especially as there’s nowhere to retreat to.

However, there are other elements of prison that work well for autistic prisoners, who can struggle with change and seek out routine. Prison life is very structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day. But a sudden break to this routine, can be really hard for autistic prisoners. For instance, if there’s an unannounced cell search or an incident.

Rules aren’t always adhered to as rigorously as some autistic people would like to see and there are times when they may become confrontational with others about this. It’s a unique experience to have written rules of what is expected of you and others and, understandably, it’s really difficult for autistic people where others don’t stick to these rules.

There are ways to help autistic prisoners to cope with these challenges, which is something we make clear in our Autism Accreditation work. Some prisons are beginning to provide information to prisoners explaining that these sudden disruptions can happen, what the process will be before, during and after, and why staff will be unable to tell them when and why this is happening. There will still be autistic people who will be very anxious about this, but their anxiety will be reduced by having prior knowledge that this kind of thing happens and what the process is and, wherever possible, trained staff who understand how challenging this is for them.

TPGA: Are there some situations in which autistic prisoners' experiences are, relatively, not entirely negative, with regards to providing routine, etc?

Hughes: There are elements of prison that work well for autistic prisoners. Prison life is structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day.

I’ve also seen first-hand how understanding and support from prison officers and staff can transform the lives of autistic prisoners. For instance, there was an autistic man, who also had OCD and ADHD, in one of the prisons that I worked in. When he arrived, staff didn’t fully understand what any of those acronyms meant, but they knew that he was vulnerable. They provided a support system around him made up of other prisoners and prison officers and saw a real change in his behaviour. The autistic man even said that prison had been the best thing that had happened to him. I have met some incredibly passionate prison officers who want to learn more about autism and the best strategies for supporting people in the prisons that they work in.

TPGA: Do you see many cases in the UK similar to that of African-American autistic Neli Latson, whose arrest and incarceration were largely due to lack of supports and understanding about autism?

Hughes: This is a really shocking case. While it’s in the US, which has a different criminal justice system to the UK, and we’re not aware of such a serious UK case, Neli Latson’s experiences do highlight how autistic people can get caught up in the criminal justice system and how misunderstandings around autism can escalate things. This, and other cases in the UK, demonstrate why it’s so important that the police and other criminal justice personnel have autism training. This would help them to understand the additional communication challenges faced by autistic people and how to prevent escalation.

The NAS has also got lots of information for autistic people and criminal justice professionals on our website, including tips and guides: http://www.autism.org.uk/cjp

TPGA: What kinds of practices and policies would you like to see change, for the well-being of the autistic people in question?

Hughes: The most important change would be to have autism training delivered as a matter of course to all staff working in the criminal justice system, from police and courts to prisons and probation.

We’ve shown how this can work, through our project at HMYOI Feltham and early work with police and probation services. A growing number of staff are also calling for this too as training has a significant impact on their ability to carry out their role. It’s important that each of the agencies share this information with one another too, so they can learn and spread best practice.

Quality standards like Autism Accreditation can also help ensure that there’s the best possible autism practice relevant to each criminal justice agency.

We also believe that there need to be more specialist programmes to divert autistic people from committing offences, sometimes unwittingly, and where they have offended, to prevent re-offending, which understand the particular motivations and communication styles of autistic people.