Autistics in Mental Health Crisis (third in a series)

Autistics in Crisis Part Three: Stop Mishandling First Interactions with People in Crisis

Even if we had the best resources for Autistics to access, mental health crises in Autistic people will still sometimes occur, and there will still be situations where a non-crisis gets reported to authorities as such. I feel fortunate. My experiences, particularly at GW, were not ideal. But I did not have forcible intervention from authorities. I feel fortunate because even though I am at lower risk of injury from crisis intervention teams (as I am white), forcible admission to a psych hospital (also known as, you know, forced institutionalization, whether short term or long term) is probably doubly traumatic.

I want to talk about a couple of things in this post:

• How crisis intervention often goes wrong in regards to the police, and the disproportionate risk that autistics of color (with and without mental health disabilities) face here, along with autistics of other marginalized groups
• Some steps to improve the first interactions by police and first responders with autistic people in crisis, both policy and otherwise

How First Interactions with Autistics in Crisis Go Wrong

For Arnaldo Rios-Soto, an autistic Latino young man now institutionalized in Carlton Palms because the state of Florida fails to provide enough community supports to its disabled community members, even playing with a toy truck in the street resulted in a person calling 911 to report Rios-Soto being suicidal and a threat. The police shot and injured his black therapist, Charles Kinsey, and then claimed they meant to shoot Rios-Soto. The police responded to the scene of an alleged mental health crisis involving black and brown people, and shot Charles Kinsey.

As Autistic activists of color Lydia Brown, Finn Gardiner, and Manuel Díaz wrote for Sojourners: “…Whether the officer was actually aiming for Kinsey or Rios-Soto, he has become part of a national pattern. Disabled people represent between one-third and one-half of all people killed by police. Black and brown people are extremely disproportionately likely to die in police-involved shootings… If you’re black or brown and disabled, your likelihood of being targeted by police only increases.”

When I asked Timotheus Gordon, Jr., who in his own words is  “an autistic African-American blogger, writer, event photographer and self-advocate in Chicago” what he felt when he heard what the police said about aiming for Rios-Soto, Gordon told me: “…the fact that the police tried to shoot Rios-Soto instead of Kinsey confirms my fear of walking on the street as an autistic person of color… Disabled people of color can play with a red toy truck, calm down from a meltdown, or rollerblade peacefully on the block and still get harassed by people.”

Finn Gardiner, who co-authored the Sojourners piece, added: “The issue of police violence is compounded if you belong to more than one marginalised community. For example, if you’re an autistic, trans person of colour, the combined effects of racism, transphobia and ableism will make you even more at risk for harm… You may have your identity completely erased. People may only see your race and not your gender identity or your disability.”

Crisis intervention also went wrong in the case of Kayden Clarke, a trans man in Mesa, Arizona. Denied a recommendation for hormone replacement therapy by his therapist because of an Asperger’s diagnosis (placing him on the autism spectrum), he became suicidal. In early 2016, after receiving a report from a worried person, the police arrived at his apartment – and shot Clarke, killing him. The police knew Clarke had an Asperger’s diagnosis.

And in February 2012, Chicago-area police shot and killed Stephon Watts, a Black Autistic teenager as he panicked while holding a knife. I wrote in February 2016 (on my previous blog), “…the police had shown up to “subdue” him…. many, many times in the past. To have had such encounters with the police, which were undoubtedly physical in nature, would be traumatizing.  Even if Watts had not been panicking in the first place, to lash out from fear of being “subdued” again is the result of a fight or flight response… As a Black Autistic, Watts faced multiple marginalization from society, with ableism and racism as a reaction that killed him.” The police knew Watts was Autistic.

And the New York Times recently reported that the NYPD uses “restraining bags” for arrests and crisis intervention, particularly in situations involving those with mental health disabilities – as the Times noted, “the bags are used to restrain those judged to be emotionally disturbed.”

These are just a few examples of the way police handle crises. 

What Are the Solutions?

Like Brown, Gardiner and Díaz, Gordon notes which people are often the targets of such harassment and police shootings: “I also dislike [the] repetitive connection between police violence and victims being disabled people of color.” Gordon went to say what he thinks is a solution to police shootings and mishandling of crisis intervention: “I want racial justice and disability rights/justice organizations to collaborate…  The collaboration MUST include organizers and activists in the disability community and ensure that actions are accessible to all participants.” Gardiner agreed with Gordon on the need for collaboration.

In terms of policy work that advocates can work for, a broad measure for police accountability overall as opposed to just crisis handling is H.R. 2302, the Police Training and Independent Review Act, which would cover comprehensive reform – not just police training on disability and racial/ethnic bias, which many of the officers involved in shootings receive – it also requires states to appoint independent prosecutors to investigate and prosecute police-involved shootings before receiving certain federal funding.

More specifically, we also need to create mobile crisis teams that aren’t police. 911 operators can dispatch those teams instead of law enforcement. Gardiner told me that crisis teams that know how to “engage with marginalised populations” are vital.

Gardiner also recommended the creation of “comprehensive peer and community-based supports that take into account the effects of marginalisation.” He also recommended “peer support like… warm lines*, advocating for comprehensive, long-term training for law enforcement, [and] encouraging police departments to hire people who are aware of racial justice issues.”

*Warm lines are like hotlines people having a hard time can call when they are not yet in crisis and need someone to talk to. I elaborate on them in Part Two of this series. 

. . .

This is the third out of a series of posts.

• Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known
• Autistics in Crisis Part Two: Crisis Aversion or Resources We Need

About the Interviewees

Timotheus Gordon, Jr., also known as Pharaoh Inkabuss, is (in his own words), an autistic African-American blogger, writer, event photographer and self-advocate in Chicago. He is the creator of “The Black Autist”, a blog that emphasizes autism/disability acceptance among people of color, including people in the black community. Gordon is a first year Ph.D student at University of Illinois-Chicago, pursuing a degree in disability studies. Follow his Tumblr blog for updates: http://blackautist.tumblr.com/

Finn Gardiner is a Black, queer, Autistic advocate and activist in the Boston area. He currently works for the Autistic Self Advocacy Network (ASAN) as their Boston Community Coordinator, leads the ASAN Greater Boston chapter, and previously worked for the Institute for Community Inclusion as a Gopen Fellow. He has a B.A. in sociology from Tufts University and is currently a public policy masters student at the Heller School for Social Policy and Management at Brandeis University. Follow his blog for updates: http://expectedly.org/blog/ 

Autistics in Mental Health Crisis (second in a series)

Autistics in Crisis Part Two: Crisis Aversion or Resources We Need

But knowing all those things I talked about in part one would not have kept me out of their ERs (preventing the crises in the first place). Knowing all those things would not solve the systemic issues contributing to crises. There are a lot of reasons Autistic people have crises. Quality of care if accessed, past or current trauma, isolation, a lack of community mental health resources, and other systemic barriers – often alongside co-occurring mental health diagnoses – combine to put people in crisis mode.

Both access to and quality of mental health care are issues for Autistic people. Many of the Autistic people who do access mental health care have reported pressure to “treat” their autism, and other mistreatment by mental health professionals. Even among professionals who do not seek to “fix” autism, Autistics’ distinct and various methods of expressing emotion and language can leave unprepared professionals at a loss and Autistic patients frustrated. There are also other factors. Some have difficulty navigating the health care system and lack support. A large number of Autistics can’t afford care for any number of reasons.

One Autistic writer highlights many of the above systemic barriers in a piece on autism and suicide (suicide crises are not the only mental health crises that occur, but Autistic adults without intellectual disabilities are nine times more likely than non-autistics to die by suicide). The author also discusses unemployment along with barriers to autonomy and social connection as contributing factors to Autistics’ high suicide rates. Here are some of the solutions the author offers:

We can be attentive to people who seem isolated and intentionally include them. We can check up on people who are known to be struggling… We can make our community welcoming to newcomers who desperately need the shelter of Autistic space. We can spread the word about autism-friendly mental health services… We can advocate for policies that support independence, like employment first and walkable communities.

For me, it would have been really helpful to have a 24-hour drop-in center or peer respite center (an alternative program where people in crisis can stay, staffed by people who have experienced mental health needs) somewhere nearby. There weren’t other options for me to stay safe. One study has indicated that peer respite centers result in better outcomes (for a variety of mental health needs) than psychiatric inpatient treatment, and there is a growing evidence base for supporting peer respite centers. 

Another resource would be a mental health phone (and text-based as Autistics can have a hard time with phones) line geared for connecting a person with services or other peer support when they are not at a crisis point. They would get connected based on level of need and which care they wanted. It would have a diverse staff to help make sure people did not end up with people mistreating them if they have a certain identity. Some similar projects, though not quite with that scope, already exist. One project called Project Warmline – people who need someone to talk to can speak to someone who has mental health needs – is in Oregon and has received state funding. Some other warmlines are listed here. It is not inconceivable that these projects could expand. 

There are significant gaps in community-based mental health resources. There is also a failure to address systemic barriers for Autistic people and improve quality-of-life research and supports by the largest sources of autism-related funding. These factors create a complex push into crisis mode for many Autistics. We can push for policy changes and support one another as fellow Autistics.

. . .

This is the second in a series of posts.

• Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known
• Autistics in Crisis Part Three: Stop Mishandling First Interactions with People in Crisis

Autistics in Mental Health Crisis (first in a series)

Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known

In January 2016, I sat in a large chair in the ER of George Washington University Hospital (GW), with my gown tied on backwards because I had never gone to a hospital for feeling unsafe and suicidal before. The ER nurses thought I would know how to tie a gown; I didn’t. Nurses came and went, occasionally conversing with me or asking questions while I waited on the social worker. Once she arrived, the social worker said to me, “more like Asperger’s, right?” I had told the nurses I was Autistic.

She didn’t seem to believe me when I corrected her.  “I’m Autistic.” It made me uneasy even in my fight or flight panic mode. At least it was something I could actually manage to put words to through rote memory. I gave her a rundown of why she should call me autistic as I had said, and I don’t know if she took any of it to heart. She also seemed to blame being autistic for my social isolation. I wish she had known that correcting someone’s statement of identity because of how they present is not okay. I wish she had known that a lot of my social isolation didn’t come from autism itself, but from factors like adjusting the area, where I was living in the area, and a lot of non-disabled people being weird about autism and visible neurodivergence.

The fluorescent lights hurt and left me with dancing spots of color in my vision. The chatter of nurses around me, other patients calling out (just wanting to go home), and the ringing of phones and intercom announcements pierced my hearing. I cried from emotional pain, but also from being in sensory hell. Not being someplace quiet and dim made it even more overwhelming.

Later that year, in June, the ER was bright and loud at Georgetown University Hospital, but I did tie my gown correctly this time. They took me to a quiet room so I could be in a less overloading area to talk to the resident, but then they brought me back to the main ER section. I wish both places had known that it’s really hard for Autistic people and people with sensory processing issues to be in an ER. I wish they would have tried to find a way to reduce the sensory input, like giving me earplugs, and putting up a partial curtain to block the lights.

At Georgetown’s ward, they were a lot kinder and had different expectations, though I still felt confined, because it was a psych ward. There weren’t the assumptions about autism this time. They gave me earplugs to help with the lack of absolute quiet on the ward. In the ward at GW, yes I was in a depressive episode. No, I didn’t want to talk to a bunch of people I didn’t know in a place I’d never been before (with no Internet or cell phone access). No, I didn’t want to go to groups – they should have stopped pressuring me. I’m Autistic. Strangers and new places are hard for me. I wish GW had known that.

. . .

This is part one in a series of an unknown number of posts.

• Autistics in Crisis Part Two: Crisis Aversion, or Resources We Need
• Autistics in Crisis Part Three: Stop Mishandling First Interactions with People in Crisis

 

Staying Silent During National Suicide Prevention Week

I watched people write posts and tweet with the hashtag with a bit of muffled, tamped-down fascination. This was my first National Suicide Prevention Week after being twice-institutionalized in one year. The hospitalizations weren’t my first times being suicidal. But National Suicide Prevention Week had always been a dull echo – mental health hotlines plastered over social media and onto the bathroom stalls at my college – much like the suicidal ideation that was constant static in my mind, sometimes flaring up like microphone feedback.

* * *

But this is not a post about my journey through suicidal ideation and tendencies.

It’s about how National Suicide Prevention Week allows society get away with mistreatment, discrimination, and other systemic factors by placing responsibility square on the suicidal individual, and then expects us to tell our suicide survival stories like we’re in a spectator sport, rather than bearing witness to society’s shortcomings.*

Yes, people with mental health needs seem disproportionately more likely to die by suicide (I looked long and hard for these suicide rates on a national scale, but only found data that “the consequences of undiagnosed, untreated, or undertreated co-occurring disorders can lead to a higher likelihood of experiencing homelessness, incarceration, medical illnesses, suicide, or even early death,” of course without talking about societal factors). But discrimination has a negative impact on mental health, and many populations experience imbalances in suicide rates. (What I mean by societal factors are: discrimination and mistreatment – including incidents that seem small, part of everyday life, and/or seem more overt and blatant).

What’s to go wrong with preventing suicide, though? I know suicide results in lost lives. I know it hurts the living. I know there’s a reason people close to me cried when I admitted myself to the psych ward both times for suicidality. I know how they would have cried further had I actually died. I know people with mental health needs die by suicide and their deaths could have been preventable through access to certain care.

But… SAMHSA says “Ideally, these [suicide prevention] efforts address individual, relationship, community, and societal factors while promoting hope, easing access into effective treatment, encouraging connectedness, and supporting recovery.” That sounds great to most people. Parts even sound nice to me on the surface. But the “community, and societal factors” parts feel like they’re still in the “ideal” stages. One of the largest charities involved in suicide prevention, the American Foundation for Suicide Prevention (AFSP)** focused on firearms and suicide, emergency department screenings and primary health care screenings as part of their Project 2025 model for National Suicide Week Prevention 2016. None of these include factors other than individual (that match the factors I’m talking about). None of these come near addressing mistreatment, discrimination, and the like. None of these address communities often impacted by trauma and/or high rates of mental health disabilities (in part due to mistreatment and discrimination).

Mistreatment and discrimination also preclude many from seeking mental health care. As I’ve said before regarding the public conversation on mental health: “[it] doesn’t factor in the many other reasons why people might not seek care. These reasons include… forms of bigotry in health care. Medical professionals are not exempt from casual or blatant forms of bigotry.” If no one addresses causes of suicide in terms of the toll of discrimination and mistreatment on individuals and communities, it is my opinion that we will not be able to reduce suicide rates as much as we want to. Further, not addressing systemic issues allows society off the hook entirely (which is a problem I have with a lot of disability and mental health awareness campaigns).

* * *

Do I believe in suicide prevention? Yes. But I believe in comprehensive suicide prevention. Suicide prevention must encompass both the individual and society. I believe in suicide prevention that reduces the amount of discrimination and mistreatment in the mental health care system. I believe in suicide prevention that works as more general mental health advocacy to provide stable housing and community services as opposed to institutionalization and lack of in-home settings. I believe in suicide prevention that addresses whole people and their relationships and communities and the impact society has on them.

What would my vision of comprehensive suicide prevention look like? My vision would look like addressing individual needs through crisis support and preventing a crisis from even happening, but also addressing societal barriers and discrimination. It would look like 24-hour drop-in centers staffed by peer support specialists. It would look like at-home services as opposed to locking someone in a hospital. It would look like collaboratively working for many forms of lessening discrimination against various marginalized people through multiple methods of advocacy, including direct action and incremental change. It would look like supported housing and late-night cafes and be a broad approach.  

Do I believe in suicide prevention? Yes. Do I believe in this particular awareness campaign of suicide prevention? Not as much as I could. 

* * *

*I do not speak for all people with mental health needs. I do not claim to. I know some people with mental health needs find these campaigns to be enough and/or to be the most appropriate thing. My opinion differs.

**I must note that I am not, in fact, wholly against AFSP, and that I don’t want to sound like their approach will do nothing at all. I just argue that it’s not enough.

I do welcome thoughts on this blog post, but I will remind you of my comment policy.

How the Media and Society Objectify Disabled People

• Introduction: Inspiration Porn
• We Could Be Next: The Risk of Being Filmed
• Inspiration Porn Hides Key Issues
• The Destruction of Privacy
• How It’s Toxic for Us
• Conclusion: The Vicious Cycle

Introduction: Inspiration Porn 

The most recent example of inspiration porn has crossed my Twitter feed. It is that a Florida State University college football player sat down and had lunch with an autistic boy in a cafeteria. The story got picked up by the New York Times. I don’t fault the college football player very much, if it all (but I hope he asked the autistic student if the company would be welcome). The football player probably just saw a person likely excluded by classmates. He wanted to make sure the student was not alone. At worst, there is the element of pity involved, but the act itself was not ill-intended.

I do fault the Internet and the news media. We, disabled people, see these types of things spread like wildfire, time and time again:

• A disabled person does something that a non-disabled person does, which often plays into the “supercrip” media model of disability
• A non-disabled person treats a disabled person with kindness.
• A non-disabled person helps a disabled person (whether the disabled person asked for help or not).

Two examples are the way the Internet took hold of the autistic store employee decorating a cake, and the employee at a Kentucky Qdoba helping a physically disabled woman eat when she asked for assistance. In the age of easy access to recording devices and uploads to YouTube, Facebook, and other social media platforms, these stories attain a viral ferocity. Journalists pick up on the fact that the video or story is trending across social media. News articles about the story crop up, fueling its spread even further.

We Could Be Next: The Risk of Being Filmed

The effects of these viral stories are quite damaging, even when one does not go to the most extreme consequences. Any one of us could be the next story by asking for help, or getting help even if we don’t want it. Since the conductor announcements of what train is approaching are hard to hear, a  blind person asks a subway stationmaster to help them get on the right train. An autistic person has a shutdown. Their friend helps them retreat to a quiet location without fanfare at the scene. A wheelchair user faces a curb cut, and they decide to complain to the city after finding another route. But a stranger rushes over anyway and helps get them over the curb cut. Someone could film any one of these situations and unleash the tidal wave of feel-good comments, shares, and news stories.

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Inspiration Porn Hides Key Issues

Inspiration porn also hides key social and policy issues. In “Inspiration Porn Further Disables the Disabled,” David Perry writes of these kinds of stories, “[the stories] all feature people doing good things. There’s nothing necessarily wrong with the content of these stories, of course, but the way they’re told conceals the real issues faced by the disability community… Inspiration porn makes us feel that everything is going to be OK.” Perry also wonders: Why isn’t the state of Kentucky providing community-based supports to the wheelchair user at Qdoba, so she doesn’t have to rely on strangers to help?

In the case of the autistic boy eating alone at school that we started off this post with, why has the school failed to model social inclusion? What about the scenario of the blind person asking for help getting on the correct train – why aren’t conductor announcements for arriving trains distinct and clear? And for the wheelchair user facing the curb cut – why is there a curb cut to begin with?

The Destruction of Privacy

They also destroy our right to privacy. As one writer in the blog post “Deprivation of privacy and other thoughts” points out, “persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.” Even if we haven’t had our privacy eroded over time, often journalists publish our names, even if the original poster of the video or story did not. Everyone now knows us as “the person in that inspirational video,” and the person helping as our hero. The instantaneous destruction of privacy tells society that it is acceptable to sacrifice our privacy to make a feel-good news story, and to do it to any disabled person… over and over again.

How It’s Toxic for Us

Finally, we notice when we get objectified as inspiration porn. We feel objectified. It is toxic. Being objectified hurts our self-image and mental health. It erodes our ability to feel safe and like we can have even some privacy. It hampers our ability to set boundaries around privacy. It makes us feel like we have no control over our life and story. We notice, and it hurts in more ways than one.

Conclusion: The Vicious Cycle 

And of course, the way these viral stories get reported and commented on further a vicious cycle, encompassed in the following:

1. We (disabled people) get seen as other – less than human, or a lower level of human.
2. Because we are other, acts of kindness toward us seem newsworthy. We are not real people, after all. We are other. Kindness toward unpeople is as newsworthy as large-scale natural disasters and transportation accidents.
3. The writers of these news stories objectify us. We are pity objects and have no agency. We exist to make people feel good about their deeds. We reach the bare minimum of humanity, if we are human at all. They make us seem other by teaching people that it’s a miracle anyone is nice to us at all.
4. We get seen as other. Kindness toward us is newsworthy. We get objectified. People learn that being nice to us is miraculous. We get seen as other… 

But we are here and human. We can tell our own stories, if anyone bothers to ask. If no one asks, we tell them anyway. We can be our own advocates, and we can also be activists and writers and professionals. The Developmental Disabilities Act says “disability is a natural part of human experience,” and this is true. It is past time that non-disabled people get accustomed to seeing disabled people in their midst as normal rather than as a news story.