Teach Autistic Youth They Have a Community (Part One)

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

an exploration of autistic mad pride: part one

Introduction:

exploring the possibilities of neurodiversity, mental health, and autistic mad pride intersections

Recently, I found an article on Medium talking about schizophrenia fitting into neurodiversity, which got me thinking about how mental health more broadly fits into neurodiversity.

There are a lot of people I know with mental health disabilities/[a person’s preferred terminology] who dislike the idea of categorizing mental health things as neurodivergence, who feel that claiming mental health stuff as neurodivergence by definition means claiming it as an intrinsic part of the self that can’t be separated from oneself- and thus can’t be recovered from.

Currently I’ve been trying to think about and sort out the various models of mental health. For instance, the recovery model as it was conceptualized and formed after the period of large-scale, long-term institutionalization talked in part about recovering from the effects of society.

Then a lot of what “recovery” means, as I’ve seen it discussed, not just recovering from society’s effects, but primarily recovering from the effects of the mental health disability. I do know people with mental health disabilities who support this idea of recovery insofar that it means that they experience a significant reduction of symptoms along with developing coping strategies for symptoms.

However, as a disclaimer, I am not in fact trying to tell people that they cannot want to recover – experience a significant reduction in symptoms etc. – from their mental health disabilities.

But I think the recovery narrative, if pushed onto us by others, is, if not harmful, not exactly beneficial, because then it is not a choice. And a lot of times that’s the only narrative people are given.

And then a lot of autistics have co-occurring mental health disabilities, as I’ve discussed in this AACC presentation (PDF) and in this blog post series (the transcript for the AACC presentation is here as a PDF). And the autistic rights movement is rooted in neurodiversity and neurodivergence as identity. 

Then the questions I have are, that I will address in blog posts to come:

  • Part Two: Should mental health disabilities be fit under the category of neurodivergence as identity? (I can’t answer this for everyone, but I can answer it for myself and the way I see it).  
  • Part Three: Why haven’t the mad pride, mental health rights, and autistic rights movements intersected nearly as much (to my knowledge)?

 

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history… Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. -Kit Mead

It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence… While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.

Autistic Unemployment: False Solutions and the Tech Industry Narrative

A Response to the WIRED Article “Autistic People Can Solve Our Cybersecurity Crisis” by Kevin Pelphrey

I have a familial connection who used to work for a medical technology company. Her then-supervisor knew I’m autistic. Then-supervisor would ask familial connection if there was a way to get me involved with the company. Familial connection would inform then-supervisor that autistics were not all the same: that I was not, in fact, a software programmer and also could not read code at superspeed and catch errors. Repeat cycle several times.

(I am good with social media, perhaps. But I can barely scrape together rudimentary HTML to put jump links on the Resources page for this blog, and it took hours of Googling and many failed attempts. I can’t write CSS. I can’t write JavaScript. I can’t design webpages or websites.)

There is nothing wrong with autistics who are good or excel at coding and software programming and technology and mechanical things. Autistics who are good at those things definitely exist. There are many things wrong with assuming all autistics are the same, that we all have the innate ability to be computer, mechanical, and software geniuses. To take it a step further: it is also wrong to assume that autistic people are valuable because of a handful of us do possess that kind of technological and mechanical ability.  

(…We’re people and have a wide array of skillsets and interests, and some of us are really good at computers, like some non-autistic people are!)

Those things are what is wrong with the WIRED article “Autistic People Can Solve Our Cybersecurity Crisis,” along with many other direct messages and subtle implications (including a not-so-pleasant quote referring to autistic children growing up as “the coming tsunami of adults with autism”).

Author Kevin Pelphrey, director of the George Washington University’s autism research institute, argues that we can fix the 70-90% unemployment rate for autistics by hiring us in the cybersecurity industry. He further argues that the this industry has a shortage of labor, so hiring us would fix that problem. His main evidence behind this argument seems to be the fact of Alan Turing’s existence.

In his argument, he utterly dismisses autistics with intellectual and/or other cognitive disabilities as having worth by writing, “At the same time, more than three-quarters of cognitively able individuals with autism have aptitudes and interests that make them well suited to cybersecurity careers. These include being very analytical and detail-oriented as well as honest and respectful of rules.”

It’s hard to know where to begin with unpacking the ableism toward autistic people, especially autistics with cognitive and/or intellectual disabilities, in that quote. It employs a number of tropes, reminiscent of the film Rain Man and common literary tropes. Lastly, he simplifies the solution to a complex issue around employment the cybersecurity industry hiring “cognitively able” autistic people.

Since only some of us are good at tech and we are not, in fact, all Alan Turing, this proposed solution will result in employment for far fewer people than Pelphrey envisions. This is a grievous disservice to autistic people, many of whom are struggling to find employment – and quite often in fields other than tech. This article tells employers that autistic people are only good at tech. It tells the general public that our only redeeming quality is being good at tech, and that we are only worth something if we stop the “monumental waste of human talent.”

The author heads a research institute on autism, but rather distressingly, cannot seem to move past a trope that all autistic people should be employed in tech. Our skillsets and interests are as varied and diverse as autistic people’s traits are. If we want employment, we should receive support to work where we want to. We should receive support to engage in our interests. Our contributions are valuable, regardless of whether they are in the workplace.

The solution to the unemployment rates lies not with increasing supported employment to only one industry. Whether it is through a government vocational program or an autistic youth’s transition planning in school for adulthood or a disability advocacy group, it lies with increasing support for us to do what we want to do.

the facts I have, and what I still don’t know: notes on autistic trans selfhood

I am 1 hour late to Transgender Day of Remembrance, if we are going by Eastern Time.

. . .

I wanted to write something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even if just a little, in a time when we need it the most. I wanted to write something about the times we’re in when trans people are considering – or are – de-transitioning. I wanted to write about how we should not be passing around suicide hotlines after an election and how Trans Lifeline is overloaded with calls.

I wanted to write about the people I have never met and maybe never will, because they are dead (in which case definitely never will), or because I don’t know how to un-silo my identities sometimes, or convince people to take my disabled identity along with me because you cannot separate me from my disability and I cannot stop being disabled just because I enter your spaces and everything is overwhelmingly bright and loud but I cannot figure how to ask everyone to tone it down some because I am afraid of accidentally trying to silence you.

(I only went to my first pride in 2015 because I was terrified of the noise, and wore my noise-cancelling headphones with music playing and carried a sign that said “Autistic and LGBTQ+ Pride” and flapped a lot to self-regulate and tried to avoid the crowds and tried to stick with the person I was with and still had to leave before too long).

. . .

I wanted to write about how much it hurts to know that all your communities have a suicide problem and all your communities have members get murdered and you feel like you have to mourn both separately even though the following facts are true:

The autistic community has a higher than average chance of being trans, non-binary, or gender non-conforming and autistic adults without intellectual disabilities are nine times more likely to die by suicide than their non-autistic peers. There is a dedicated site to those we have lost to filicide. The trans community reports a 41% suicide attempt rate, as opposed to 4.6% of the general population, and 2016 breaks the record for most trans people murdered in a year.

What happens when you’re trans and autistic?

I mourn the deaths.

. . .

I do not know the answers to how I will act to be not just an autistic activist with mental health disabilities, but also a trans activist who fights more deaths in the trans community. I want to be an activist who is aware of the intersections that trans people have – trans people of color, autistic trans people, otherwise disabled trans people, and so many other intersections – and tries to work in the space I have and not overtake others’ voices.

But I am still working out my non-binary and trans identity. I am still trying to figure out how to create spaces that work for both autistic trans people like me and non-autistic trans people. I am still working on figuring out how to be a part of more than one community.

. . .

I wanted to write about something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even just a little, in a time we need it the most.

I wrote what I could instead.

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.

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 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.

 

How the Media and Society Objectify Disabled People

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.

 

Autism, Mental Health, and Undiagnosed Chronic Pain

This is a blog post out of more to come on chronic pain and exploring what it means to be in chronic pain and learning how to be visibly seen as being in such pain.

Some of my friends and acquaintances know that in recent years, particularly the last year, I have been having chronic pain. It’s not as bad as some people’s. It doesn’t really get to the level of excruciating, but it is constant. It also likes to be super inconvenient when going down flights of steps.

So, I’ve done two things: bought a more supportive pair of still professional looking shoes, and bought a cane. Fortunately for the cane part, I have enough friends with chronic illness that I am getting tips on how to not damage everything worse (and the signs point to it being progressive, as the pain has increased over the last couple of years).

Image is a cane with an organic, almost paisley-like abstract design in reds, oranges, and pinks. It has a very dark brown wood handle.

So there’s the cane, pictured to the left of this sentence.

Now is where you’re probably asking, “are you seeing a doctor for this?” The answer is yes, I am. It is just taking forever. This is because multiple people, including myself, suspect I have a form of Ehlers-Danlos Syndrome (EDS). I would show you some more of the reasons why people think that, besides chronic pain, but images of my joints and skin doing weird things are probably not the most palatable.

And most of the EDS doctors are in Baltimore. I am in DC and don’t drive. This is going to mean hauling my autistic, disabled, in-pain self  to the Greenbelt Metro from a not-close Metro station in Virginia and then find transport from there (maybe take the shuttle to the Baltimore airport and then Baltimore public transit). Or use another option, like Amtrak (expensive, but 40 minutes to the Baltimore Penn Station) and Baltimore public transit. Or Megabus and then a form of Maryland public transit (about 3 hours, possibly also more expensive than I want). Note: I am fortunate enough to be able access care at all, even though the journey may be difficult.

EDS is a genetic connective tissue disorder with not enough specialists in it.  In addition to most of the specialists closest to me being in Baltimore, the referral process can take a long time. I have to see someone who will refer me to an EDS and genetics specialist before I can even get on a specialist’s waiting list.

Also, I thought I was just depressed and that was causing the pain for a couple of years. Also, I was for the most part depressed for several months straight recently, and put it off because I was dealing with my brain being a jerk. And I don’t have the best executive functioning, let alone in the middle of depressive episodes. Even now, I’m worried my pain won’t be taken seriously because I have generalized anxiety and a history of depressive episodes.

Another reason is perhaps something I feel the most weird about: internalized ableism. “I’m disabled. I’m a disability rights activist. I should not have internalized ableism,” is the thought process. In some ways, I was afraid of admitting I had chronic pain. I am still nervous, to be honest. I am also nervous about the possible implications of EDS. I know there will be a community of “zebras,” as people with EDS call themselves, and others with chronic pain, to support me (thank you, Literal Heart folks, you’re a really good source of support, for me and for everyone in the group). But it’s still hard.

The amount of time it is taking me to get a diagnosis of EDS points out a lot of problems in the health care system, particularly for people with other disabilities, including autism. Like me. That could be another whole post, but for now, maybe just know that according to this study, “premature mortality was markedly increased in ASD owing to a multitude of medical conditions.” Owing to a number of medical conditions, many of which were likely treatable. But many of us are low-income and struggle to access health care. Or we have communication barriers to expressing our needs and health issues (and often go unsupported in this area). Or we just have a high number of co-occurring conditions whose relation to autism  like EDS – don’t get studied.

And like I mentioned… I have generalized anxiety. I have a history of depressive episodes, which are known to cause some amount of physical discomfort and pain. Even when I was having physical symptoms in college that had me close to fainting and being out of it, and would later be diagnosed as a quite serious medication interaction – one of the assistants for student housing took me less seriously when I recited my psychiatric medications from memory. It was one of the only things I managed to do that night as I got progressively more out of it (in fact, I was so out of it that my friend who was with me was the one who noticed her taking me less seriously). The student housing assistant assumed that it was in my head. I have quite a many things going in my head. But this fogginess and incoherence was not the result of one of them.

This is going to be a quite annoying and long road to deal with – getting diagnosed. I find it striking that even after the end of getting a diagnosis, I will start getting care at 23 sooner than a lot of other people with EDS. The other part of the road, the reason for new shoes and a cane, will be continue to be physically painful to deal with. But I will have people to turn to for advice and a new community to join.