life lessons from a "difficult child"

In preschool, I ran circles around my classmates.

“Here's the stack of novels she's read today.” The teachers would indicate a large stack of books in kindergarten in first grade to my mother. “Here's the amount of classwork she's done.” A stack of uncompleted worksheets.

I thought the psychiatrist's questions were rather pointless. His condescending manner struck me even as a young child. I couldn't express it in words, so I bit and threw anything I could at him. By the first grade he had given me diagnoses of Oppositional Defiant Disorder, ADHD, and anxiety.

Age 14: I am diagnosed as autistic alongside those.

Age 16: depression.

Throughout: Social skills work. Therapy. Psychiatrists. Medications.

My life has been a cocktail of medications prescribed as diagnoses tacked on each other. My body and brain rejected many of them. Some altered my mood dramatically; others made me fall asleep in class even when I didn't want to. A combination of them gave me seizures in college. I tried to bail from them cold turkey and wound up with withdrawal symptoms for six months. I have no idea what the current ones – a much nicer combination than the last combination – have done to my brain chemistry; I can't function without one of them at this point.

I was gone up the tree when someone stops looking. I was screaming at people who touched me. I was shredding paper and trashing my room and causing a ruckus. I had broken another electronic item; this time, it's by accident, but last time, I threw it.

I never had access to enough language to express my feelings, my past trauma that I didn't know had happened yet, my pent up rage at the turmoil my life constantly seemed to be in. I tried to put words to feelings that I didn't know about, to use words to explain, but it failed. The same words that were my refuge on paper, working on novels and typing out poetry and stories, failed me with trying to express my deepest feelings.

Everything is a pathology, something that needs prescribing for, because we are “too difficult” otherwise. We are to be behaviorally-modified and we are to be silenced one way or another. My life has been through this framework. People wondered how to “fix” me. I was “that kid,” the weird one who moved funny and talked funny and could only talk about cats and gerbils and books, who seemed either lost in their head or too loud and frenetic for this world, who ran off to investigate things without a moment's care of whether I lost track of who I was with.

And yet I was never “from hell.” No one with a disability is from hell, Alison M. Thompson, author of the Boy From Hell: Life With a Child with ADHD. You've gotten that book republished. Congrats, I guess, on implying that we are from an otherworldly dimension of fire and punishment. This is how people see us: punishments, burdens, deadweights.

What about us?

We read your stories and hear your words, no matter how lost in our heads we seem. We are not your experiments in how quiet and orderly you can make us. We live and experience trauma from the way people treat us – we should have your support of all people's to back us up against a world that thinks us a waste of space, not contributing to the pain and trauma. We live your words and your punishments, reared to feel defective and that we'll be only considered almost people if we pass by your standards.

I never learned to shut up and be still. I never learned how to limit the amount of space I take up. I never learned to modulate and self regulate for others' discomfort with my disabilities. I never will. It breaks my heart that people live with the exhaustion of self-regulating into silence or compliance. It breaks my heart that people are learning the ways they supposedly don't matter from the world and all the ways they move and communicate are supposedly wrong.

I work for a world where it is at least mostly safe to be disabled, visibly or not, anywhere, anytime, and no matter who you're with. It is exhausting and painful and sometimes triggering, and sometimes rewarding. I would do it without any of the rewards. It is important enough to me that I lose sleep on how to best benefit the disability community.

Because we are not disposable, or punishments, or wrong for existing. 

--

Note: I used she pronouns as a child

Autistic Pride Day 2015

For Autistic Pride Day, I want to look at where we've been. I want us to move forward together. 

*This is formatted to be linked to on Tumblr, hence talking about Autistic Tumblr.*

Where We've Been

Read this. It's where Autistic Tumblr has been.

Autistic Tumblr has been around for quite some time, starting small, growing ever larger. Of course, Autistic Tumblr is not the extent of activism in general, but I'm posting this on Tumblr, so I recommend reading it. @iamthethunder was actually there, so read that. I can't write to the history of Autistic Tumblr very well because I only popped up in 2013.

I also know that Tumblr isn't the beginning or end of activism, so. There are so many things we have participated in off Tumblr with people who are not on Tumblr. The history of autistic self advocacy as we know it tends to go back to 1993.

Autism is a particularly interesting part of neurodiversity. I don't say this just because I'm autistic. Neurodiversity was born out of the autistic community's desires to separate itself from a parent-based movement in the 1990s. I would argue that's a movement for a modern age, one that needs to be embraced.


“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, “I wish my child did not have autism, what they're really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.”1 Jim Sinclair penned these words in 1993, and presented them at an autism conference as part of a larger piece entitled “Don't Mourn For Us.” It is largely considered the foundation piece of neurodiversity and the autistic self advocacy movement. Sinclair described the experience of being displayed at autism conferences “a self-narrating zoo exhibit,” where parents of autistic people would pepper them with questions about autism and not expect self advocacy. When Sinclair wrote Don't Mourn for Us, this surprised parents and created anger. Sinclair and others infiltrated listservs, conferences, and met other autistic people, and started talking for themselves. There was great controversy about this – they got kicked out of spaces quite frequently for being self advocates and activists.

Sinclair also created Autism Network International, a group comprised of listservs, forums and a print newsletter, with resources for autistic people, and also for parents of autistic people. ANI also hosted Autreat for many years, a space for autistic people to meet in person and have workshops.

ANI marked a fundamental split between parent groups at this point. Previously, advocacy work for autistics had been done under a cure culture mindset and by parents.

If one considers the larger disability rights framework, autistic self-advocacy developed particularly late, three years after the ADA was passed, in 1993. A group for autistics run by autistics that worked for change in public policy did not develop until 2006.

An example of when autistic advocates took a fight against cure culture occurred in 2007; Joseph Kras analyzed the response to the NYU Child Study Center’s attempt to raise negative awareness about autism and other psychological, psychiatric and neurological conditions. He writes that the “campaign consisted of several ransom notes posted on large billboards, ion kiosks, and at construction sites in New York City and published in Newsweek and New York Magazine.”2 The messages existed as dire warnings of what autism and the other conditions would do to people’s children. The Ransom Notes campaign response came swiftly, Kras notes, not in the form of lawyers arguing over whether it existed as a publicity stunt, but by a “grass-roots internet protest led by self advocates.”3

The president of the Autistic Self Advocacy Network (ASAN), Ari Ne’eman, posted a petition, emailed list-servs, garnered attention from multiple disability rights organizations, posted a sample letter on the ASAN website and distributed contact information for NYU and its board of directors. The arguments Kras describes them as using based themselves on concepts seen in Mel Baggs’ work in the 90s and again later, in the 2010s, after the Ransom Notes affair: that the ads stigmatized disabled people along with creating a sensation of doom that would not encourage parents to seek supports for their children, with the implication that disabled people should not be stigmatized but accepted and all disabled children and adults should receive the proper supports to navigate a world not made for them. 

It has largely been marked as the time when neurodiversity came of age.

Social media has been integral to these movements. This is a movement which is perfect for my generation and newer generations with ever expanding networks. 

Where Do We Want To Go?

Inclusion and intersectionality, in my honest opinion, have to be key components of anything moving forward (I do have a section for it on my Resources page). Autistics of color have routinely been shut out of leadership positions in the broad disability rights movement, but not because they have nothing to say. There is a reason why you don't hear about the Black Panthers working during the 504 sit-ins with disability rights activists, and it is difficult to locate autistics of color in the birth of the neurodiversity movement. They may have been relegated to lesser positions or denied opportunities to speak. Autistics of color are also misdiagnosed frequently, which could be another reason.

However, disability rights organizations in the United States are also starting to pay more attention to the regular mistreatment of Autistics of color. I credit autistics of color themselves for pushing for it. I look to see the day where marginalized communities can figure out a really great approach to intersectionality. Oppressions tend to layer within one another, from LGBTQIA and queer oppression to racism to ableism. I want communities to build up, and up, and up.

I also look to having a close-knit community.

As @iamthethunder said, “ I hope it starts to feel small, though, and that people here are never content, always reaching for what comes next.” Cohesive action will be the name of the game in forging new paths of autism acceptance. Caring about each other and working to put differences aside will help. I am already proud of Autistic Tumblr and being Autistic.

On this Autistic Pride Day 2015, I challenge you to not only have pride in being autistic (if you can't, that is OK too. I am not blaming any autistic person for how they feel about their autism), but to think outside the box in regards to forming a thoughtful, progressive community. I want communities to build up and never stop. I never want this community to be in a position where one loose Jenga tile can send it all falling down.





1Jim Sinclair, http://www.autreat.com/dont_mourn.html

2 Joseph F. Kras, “The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age,” Disability Studies Quarterly 10, no. 1 (2010).

3 Ibid.

#JusticeForKayleb and the school to prison pipeline

At age 11, Kayleb Moon-Robinson is a nearly convicted felon. His crime is kicking a trash can, then being unnecessarily restrained by a police officer, while autistic and black. He's not the only one. Virginia, where Kayleb lives, also leads the nation in putting students through the juvenile justice system.

The rates of the school to prison pipeline and rates of incarceration of black individuals is staggeringly high, including those with disabilities of all kinds. The Civil Rights Division of the Education Department reported in 2014 that “While black students represent 16% of student enrollment, they represent 27% of students referred to law enforcement and 31% of students subjected to a school-related arrest.” Read that again. They are subject to twice the rate of arrest than their actual population within the schools.

The Southern Poverty Law Center reported on Lousiana's record of discrimination. In it, there is a description of a black autistic girl – a 10 year old – having a meltdown in class and climbing out the window and up a tree. The police dragged her down from the tree and handcuffed her to the ground.

And no, it's not because black people are inherently more in need of arrest. They've been arrested as things simple as throwing Skittles. These are things I can imagine a lot of middle schoolers doing. The American Civil Liberties Union has some recommendations on what to do about it for schools, and it is clear that any solution must involve advocates of color.

And often, while disability can be a factor in the school to prison pipeline, disability advocacy focuses on the disability and leaves the race behind as a significant factor. I encourage any fellow white advocates reading this to examine the intersections of racism and ableism.

More

• All Day Justice For Kayleb Social Justice Event
• School to Prison Pipeline Fact Sheet
• Intersected, Justice for Kayleb Moon-Robinson
• Morenike Onaiwu, Justice for Kayleb NOW
• Petition and petition updates for Justice for Kayleb
• Why Does The US Incarcerate So Many People? Al Jazeera America
• Virginia Governor Asks How To Reverse Schools' Staggering Rate of Referrals to Cops and Courts
• Education Department Civil Rights Division: Protecting Civil Rights, Advancing Equity, 2013-2014
• Free Thought Project article on Kayleb
• The Grio article on Kayleb

The Problem Isn't "Infighting"

Recently, I posted “Polarization” and “When You're Not Loud and Angry Enough” on here, and on Tumblr. Discussions have sprung up, and I hope they continue, because the way the Autistic community treats other members of the community needs a fair amount of addressing. The discussions that have been started on Tumblr following those posts are not “in-fighting,” as I've seen the discussions called. I'm going to get more specific here and less jargon-filled than those posts and also add on extended commentary to reactions I've seen to the posts.

–

There are no such thing as good Autistics and bad Autistics, to be explicit. If good Autistic people are accused of sucking up to NTs and non-autistics and bad Autistic people are the heroes who actually call out people, how on earth do you expect solidarity within a community when people are trying to strike a divide? I know people who, on Facebook, Tumblr, elsewhere, who have been told that they are just goody-goodies and that they have no place in activism. It could have been me.

When you talk about a community, you take into account everyone. The people who feel guilt because they pass as neurotypical, the people who don't take pride in being Autistic, the people who maybe even want a cure, the people who feel guilty because they don't always have the capability of fighting every battle, the people who need accommodations, the people who need support staff, the people who need neither, and the list goes on.

You take into account the people who disagree with you.

The original posts were never about allies, and I did write it as a semi-response to the TPGA debacle – but not from the perspective of ally worthiness. I see people taking it that way anyway. The posts were about that there is often no room for disagreement in this discourse, and more importantly, that the way people are treated (like me, and others) when we disagree, people yell at us.

I should not have to constantly remove myself from Autistic spaces because people are being abusive with their language and treatment of other people, Autistic or neurotypical, to be clear. This is not tone-policing, as someone told me it was. It is not tone-policing to request a stop to the endless barrage of explosions and abusive language. And abusive language doesn't even have to be in all capital letters, to be honest: it comes in the form of “you disagree with me, so here's why you should screw off.”

The problem isn't the “infighting.” The problem is the continued mantra that asking people to stop being flat out mean and abusive is silencing, but yelling and intimidation are not silencing, and if you say they are, you are tone-policing.

When You're Not "Loud and Angry Enough"

We clearly need to figure something out, as a community. When the Autistic community has scared a good amount of Autistic people into not being able to say things, what has it become? I was one of them, for a while. I’m not going into direct confrontations on Facebook (I don’t have spoons to deal with the arguing that would happen), but I’m writing this post.

The goal of a community is to not echo-chamber itself into only allowing certain ideas and viewpoints into it, which, frankly, has been a lot of what I’m seeing. People are attracted to the ideal that explosive, sometimes abusive behavior is okay when you’re part of an oppressed group. We as a community have dealt with a lot of pain. We’ve lost a lot of children, teenagers and adults to caretakers, and we’ve been abused in the name of therapy. I would not deny this community anger at things that have been done and are still being done.

The echo-chambering I’m seeing, though, is that if you’re not loud and angry and constantly scouring the bits of the Internet to confront and call out people, you are too polite and constantly want to make nice. The echo-chambering I’m seeing is permitting the silencing of some Autistic people through fear while saying that you’re being silenced when someone has a different opinion than you or wants you to stop yelling.

The dynamics of a community, the fabric of its being, does not rely on explosive techniques. The explosiveness I can no longer be quiet about drives potential allies and newly diagnosed Autistic people away as an unsafe space, and more importantly, many Autistic people may look at this community and wonder what is getting done, wonder if they even want to be part of it, and credibility is damaged. And what will we tell the people who aren’t privy to our conversations and are not able to join in, who may rely on us to help enact change in the community and society? What then?

Polarization

Polarization

 

I am sometimes afraid of “Autistic spaces.” I get afraid of the fact that hey, if I don’t like the fact that people are yelling about things because I have trauma in my past related to intense anger/yelling/emotional abuse… I’ll be told I’m tone-policing, that I’m a goody-goody with the neurotypicals and non-autistics.

“If you don’t like our anger, just leave, if you don’t like our anger, you’re trying to silence us.”

I am not trying to silence anyone.

There is a difference between explosive anger and righteous anger.

There is a difference between calling someone out and completely lambasting them into the next century with an explosion.

I’m trying to navigate a world of activism where if I disagree with someone, I might get yelled at – by other Autistics, of all people. I’m trying to tread a line between telling someone to stop triggering me and tone policing.

You can’t claim to want a safe space for Autistic people, then summarily explode at other Autistics who disagree with you because yes, we have other opinions, and no, it’s not because we just want to suck up to neurotypicals and non-autistics. Sometimes we have other methods of activism that still include calling people out.

It has a polarizing effect on the community. When people accuse us, the less angry-sounding, of being textbooks for neurotypicals, have you considered: maybe we don’t always have the energy to fight every battle? Maybe we don’t have the energy to yell and scream? Maybe we also don’t feel like triggering other people with explosive language?

I should not feel unsafe in Autistic and autism community spaces both from neurotypicals/non-autistics and other Autistic people.

Maybe, in Poetry... Reflections on My Autistic Pride Poetry

TW: Abuse, murder, electric shock mention, links to things on "quiet hands"

I successfully read my poems, "Writing out Infinity: Autistic Pride" and (tw: ableism, violence, murder mentions) "Power Structures" at the 100 Thousand Poets for Change event on Saturday, September 27.

 I received an email later telling me that my poems had touched their heart. It made the fear of standing up in front of people with that microphone, staring at the papers in my hands, trying to put conviction in my voice because I am the authority standing up there on the stage and I know being Autistic is not shameful and I know all the things that have been done to us, worth it. 

I wasn't sure they would understand what I meant by neurodiversity or by infinity, or or the description of stims. I wasn't sure people would understand what I meant by people being afraid to move their hands, or people being afraid to be Autistic in a world that sympathizes with our abusers and murderers, and the innumerable counts of abuse done to us through electric shock and aversive therapies and forced normalization and telling people they can't move their hands and they cut our vocal cords because we scream too much. 

Maybe, in poetry, the graphic or specific details don't need to always be there. Maybe, in poetry, the conviction with which you say it will tell them it's true, will tell them they should look into it, will tell them to presume competence and believe me and tell them that we are not suffering burdens 

--and that we can love ourselves just as much as any non-disabled person. 

 

A Right to Representation

This buzzfeed article on "Parenthood" and autism (the spark behind this post) uses really problematic language, like 'battling' autism. Most Autistic people I know, including myself, don't battle against it- we accept, embrace, and celebrate our neurotypes. Sometimes it is not a picnic, but no one's life is a picnic, and we don't have to like every aspect of our disability in order to embrace it and be proud.

It quotes no actually Autistic people and uses a quote from Autism Speaks, an organization that most Autistic people stand against for its propagation of myths such as Autistic people are broken, diseased, require normalization through methods such as ABA, and need a cure. It also uses person-first language (“with autism”) rather than identity-first language (“Autistic”).

I may be rehashing what people have said over and over again in numerous posts about representation in popular culture and about including our voices in articles and policies written about us. In no way am I, however, beating a dead horse. If I was beating a dead horse, there would be ideal representation, inclusion, and more listening to us (and even then, it might not be a dead horse because there would still be people trying to drag us back down).

There's the thing where they write articles on us without talking to us. People gladly assume we do not like being disabled, or that we cannot communicate about being disabled. Sometimes, perhaps, they do know, and just decide to talk for us anyway. We deserve to be included; we have thoughts. Traditional manners of communication may not work for us, but we still have opinions. We all have the right to be a self-advocate and be heard.


Then there are films by disabled people about disability, but people seem to jump for the sensationalized, dramatized, and either tragic or magically-cured stories. This is why, for instance, the Kansas City chapter of the Autistic Self Advocacy Network created a petition for Netflix to include films about disability and chronic illness by actually disabled and chronically ill creators. They compiled a list of films by disabled and/or chronically ill creators here.

We shouldn't have to make petitions about better representation, but we do, unfortunately. A lot of showrunners will deny their character is even Autistic because the character either “functions too well,” or they didn't mean to write the character that way, or they don't want the stigma of having an autistic character on the show. It's often a combination of them. Disability in general also doesn't fare so well. Disabled characters are often played by able-bodied actors, which leaves them able to 'stand up' or go off at the end of the show or film. Often we're depicted as either violent or savant. Often we get cured, get killed, or die in some fashion.

These depictions lend themselves to stigma in multiple ways. People can be afraid of us because we're not making eye contact or doing “strange” hand gestures or pacing. People expect us to be savants when most of us are not – giving the idea that we're only worth something if we have some miraculous skill someplace “despite” the disability. Cures imply we need them. Our deaths imply that death is a fate kinder than disability.

This is not just an issue that affects disability; it is intersectional and should be treated as such by all marginalized groups. We are one of a marginalized people and culture. Queer people, trans people, PoC, women, religious minorities and other groups also have a lot to work for in the field of representation. We should just make a collaborative series of films between disabled people, trans people, queer people, women, PoC, and as many religious minority groups as possible, and other groups too... because we all have a right to representation.

(also posted on Tumblr)

We had to pick a topic for our Speech class

and we have to present a two minute thing on the topic we have chosen. Of course I picked this:

Topic

A History of Autistic Self-Advocacy to Now

• Context: Domination of Parent-Based Advocacy and its roots
• Roughly when did the self-advocacy movement begin after years of being dominated by parent-based advocacy?
• What struggles did they face?
• What struggles do we still face?
• When did the movement, along with the neurodiversity movement, “come of age?”
• How has it evolved into its modern form?
• The Modern Platforms

Reasons for selecting topic

I am an Autistic self-advocate and activist. I believe in promoting the acceptance of disability, abstaining from the attempted normalization “treatments” forced upon many of us, including us on decisions that involve us (and not just as token representation), presuming competence of disabled people, and supporting fellow disabled people.

Why it should matter to everyone

The rights of Autistics and of the disabled in general are harder to attain because of ingrained discrimination in society. People fail to include us in policy-making, advocacy, and in our own lives. Organizations like Autism Speaks would try to speak for us and try to force us into normalization or cure when the majority of us oppose such treatments and cure research. We are human; we have autonomy. As people, and as the marginalized, our rights are civil rights. As the old adage of the disability rights movement goes, Nothing About us Without Us!


My sources will include

• Books written by early researchers of autism, such as Bruno Bettelheim (to provide context for the birth of the parent-based advocacy movement).
• Loud Hands: Autistic People, Speaking edited by Julia Bascom: a recent anthology published in 2012 by Autistic people on their experiences, advocacy work, the discrimination against Autistic and other disabled people, and our history.
• Posts written by parent-based advocates and the website “charity” Autism Speaks who tend to oppose the idea of Autistic self-autonomy and try to force their children into normalization.
• Web archives from prominent first self-advocates such as Jim Sinclair (author of "Don't Mourn for Us" and "Why I do not like person-first language," and founder of Autism Network International) and Mel Baggs, especially in the 1990s
• Current posts from Autistic self-advocates around the web, including myself
• The Autistic Self Advocacy Network's webpage and their updates (ASAN is a self-advocacy based nonprofit based out of Washington, D.C., run by Autistics for Autistics)

• Notes I took during my Autism Campus Inclusion program in Washington D.C., sponsored by ASAN, which took fifteen Autistic college students to D.C. with various speakers and sessions to learn about history, advocacy, and action, including people such as the Executive Director for The National Council on Disability.
  

 ... is that enough