Autistic community issues: “Gatekeeping words” edition

*Update: The autism ask blog has posted a well-worded apology after taking the time to consider many of our thoughts and feelings on the matter.

Tumblr folks: This is an expanded version of my other post.

There has been (another) recent kerfluffle regarding language (this instance is on Tumblr). Specifically, people are gatekeeping the term “special interest”. An autistic person decided that an ADHD blogger who manages a blog for ADHDers was incorrectly using the term special interest due to her being non-autistic. Despite her providing evidence that it is not autism-exclusive, the person went to an autism ask blog. There, they were told the term is autism-exclusive. The autism ask blog is wrong.

With that context: I am an autistic person with ADHD, and I have a request. Could you stop telling me that I have to use two different words to describe the same experience I have that I have no idea which “diagnosis” it comes from? (By the way, brains are not partitioned like that, so my neurology is affected by both, sometimes in very interchangeable ways that you don’t know which one is which!)

And the autistic community, as one blogger​ points out here– has a pretty long history, and we haven’t been this exclusionary with words from the start. I have put together and managed submissions for some of that history at ourautistichistory​ (Autistic History Month). And some of it is probably lost as domain names expired or the list servs went defunct. But the moderator of the actuallyadhd​ blog, who has ADHD, has been involved with list servs and later platforms of the autistic community since 1994. She is an autistic cousin, which is a decades-old term that refers to someone “who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”

To ignore that fact, along with the first blogger’s note that these kinds of words have not been considered exclusive to the autistic community from the start – which is roughly three decades ago – is negligent. A community should know its history, and we need to know our history to work for change. 

And it tells people that we are not a community that welcomes people unless they share our specific neurotype. It tells many people who are wondering if they are autistic that we are a community who will not welcome them. That may make them afraid to approach us, or learn more about autistic community and autistic culture. It tells people we are a community who is willing to gatekeep, and that is not what I want people to think of the community I love and fight for.

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Expecting ways of communicating to define an Autistic person

Feedback is welcomed, but please see the bottom of the post first.*

Autistics have largely argued that no one should assume we are alike. Our differences include communication styles, external presentations, or supports needed. Being human like anyone else, we also differ in goals, interests, and hobbies. We’re all still Autistic, but we need others to stop basing all their assumptions on that. In particular, people make assumptions from communication styles. Some of us communicate with significant support, little support, or somewhere in between. Some of us use assistive technology and some of us don’t. Some of us don’t have access to language most people understand. And defining us based on communication style we use (or off any one or two traits) is unhelpful.

Yet it’s not just an issue of non-autistic people making snap judgments. Some Autistics who talk neurodiversity on the Internet also like to ascribe certain Autistic traits to select narratives. One such narrative is that those of us who identify ourselves as speaking Autistics tend to be non-visibly autistic and have few direct support needs. Often, the narrative includes the idea that we’ve learned how read non-autistic people’s behavior or at least mimic it. Many posts intended to be helpful for community members are written through this lens. There are Autistic people who fit this narrative, and there is nothing wrong with that. The issue occurs when the narrative doesn’t make room for other people’s stories.

I identify myself as a mostly-speaking Autistic, and I don’t fit well into that narrative. My communication style is assumed to be “expressive” because I talk out loud most of the time. I’ve written about it before in the blog post “You call me expressive and miss the struggle it takes.” There, I wrote about my personal relationship with speech, and the incorrect inference someone made about me. They decided that I couldn’t have many support needs or real struggles with communication out loud.

But I do have a number of direct support needs, somewhere between “needs little to no direct support” and “has high direct support needs.” My mother, who lives several states away, attempts to provide what support she can, but I honestly need more in-person help. I am able to take care of my cat, but taking care of my own needs is harder. I am forced to navigate a system and a world not designed for me with very little built-in to help me. I also am not good at reading people, and it’s a challenge to mimic non-autistic people’s social norms. The majority of the time I also display body language and speech patterns that are visibly Autistic and/or neurodivergent.

Not all autistic people who speak the majority of the time are like each other, and it is harmful to assume this falsehood. I received and still get little support, in the past (such as during college) and now, when I need it. Many posts I see that are intended to be helpful for the type of Autistic they assume I am are actually not, either. And it harms Autistic people with higher support needs than mine, as well. The narrative doesn’t leave much room to presume competence (which is different than valuing a person only if they have some secret gift, which many seem to base their respect around). Few posts in the community are geared to be helpful for high-support Autistics who are very visibly so (Yes, I have admittedly written these posts before, and will probably mess up again in the future).

People who espouse this narrative seem to assume that other Autistics have the same struggles and the same strengths – and therefore there is no room to even consider what high-support Autistic people, and other people who don’t fit the narrative, can contribute to our movement. Non-autistic people should stop judging us from one or two features. But some in the Autistic community would do well to stop, too.

*(For the record – no, I’m not saying most of the people in the community make these kinds of assumptions. Just some do, but it still really needs to stop).

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

#AutisticPrideDay 2016

I am not sure how much I have to say; this is the third Autistic Pride Day I’ve written something for. It feels as though I have exhausted and extolled the mantras of pride, taking up space, having loud hands, and of having a neurodiversity community that will have each other’s backs as surely as we carry the weight of the dead, of injustice, and of trauma that can result in emotional whiplash among us. I will try anyway.

There is something to be said about the value of connection. There is something to be said about a group of autistic adults and self-advocates and activists whose previous generations are dead and lost, in institutions or just dead. There is something to be said about a group of autistic adults and self-advocates and activists whose future generations we try to teach neurodiversity and self-acceptance and self-advocacy to.

There is something to to be said about the pride we carry, that we carry as surely as we bear the pain of discrimination and the pain of things done to us. We carry it like the candles we hold up to the dusky, darkening sky on our Days of Mourning, lighting them together to build a torch. The torch has the power to light the way, or set fire to what we’ve built already.

The pride we carry can change things and people everywhere. The Lancet, a major medical journal, published an article on Autistic Pride. The Republic of Malta wants to build an inclusive rights agenda for autistic adults. California is shutting down its institutions for people with developmental disabilities. Maryland voted to end subminium wage for disabled people. All the Weight of our Dreams, the anthology by autistic people of color, has a webpage and is forthcoming. We had two Democratic candidates for president notice people with disabilities as a voting bloc and start supporting disability rights legislation. The FDA is taking comments on a proposed ban on contingent electric shock devices used on disabled students. There is a battle for the future of autism advocacy – something that previously would have been unheard of. More and more we’re creeping into mainstream publications like the Washington Post and other places.

Many of us are traumatized and a lot of us are scared. Many of us are in pain and many of us have doubts. Many of us have negative self-image and many of us are not sure how to move in this world. None of that has to preclude pride. To my autistic brethren who are there and talking about pride: remember that the torch we carry has the power to light the way, or set fire to what we’ve built already. And to my autistic brethren who don’t yet know how to be proud: I will wait for you, always.

 

On Autism Acceptance Month

We put so much into trying to reclaim “Autism Awareness Month,” our reactions informed by trauma, abuse, neglect, and pain. It is the month where many of us are surrounded by blue lights and puzzle pieces. We turn to seeking those out and commenting furiously, fueled by pain and anger – with mixed results. We write long blog posts and hold acceptance events trying to counter the flood of “awareness.”

We have made some progress, such as Apple calling it “autism acceptance” with no mention of “awareness.” This is important that people saw it called acceptance, though many don’t have access to iPads, which is concerning and needs to be addressed. We’re getting the word “acceptance” more mainstream.
But what if we put some of the same energy into claiming our other Autistic holidays that we made ourselves? Autistic culture can blossom further if we allow our holidays to grow, to become cultural phenomena that is talked about outside autistic circles:
I do not oppose working for acceptance during April, obviously! I am of course against LIUB and the like. But what if we put some of that April energy into being for things relating to autistic culture and pride, instead of mostly focusing on a month where it’s a constant being against things like Autism Speaks and “awareness,” which can be exhausting?

What do you think?

My Autistic Wishlist

There is an autistic wishlist hashtag event going on over on Twitter. It is aimed at advocacy organizations.


This particular autistic wishlist is not directed primarily at advocacy organizations. It’s not going in the hashtag.


It is directed at a community constantly in pain. A community constantly expanding outward, pushing against the fringes. A community that could probably stand to be gentler of people with clumsy language and communication disabilities (see my Autistics Speaking Day post).


My autistic wishlist is that our community can handle the constant pain of both outside forces, and turning inward at each other. That our community, expanding outward and challenging perceptions, can introspect long enough to fight together and dispel the distrust constantly aimed at each other.


Yes, I do have a long list of things I wish for with advocacy groups. But it is alongside a deep desire for our existing community what I have tried to outline above.


If you are with me, this journey will be hard. But I will support you any way I can.

Defining Ableism

Defining Ableism

Note: This is U.S.-centric

***

Sometimes it feels hard to define ableism when it is all around us and everywhere and so much more than language. Language contributes to, and perpetuates, ableism. Ableist acts can include language.

But I keep thinking of the time in Fall 2013 when I started having seizures from a medication interaction. The seizures were atypical. No one knew what they were, least of all me, too out of it to tell that something was actually terribly wrong.

What I most vividly recall is not even the night I had my worst episode, but the day after, when my friend and I talked about it and she’d been terrified to call 911 because of the way I was presenting. Because I was slurring incoherently like I was having some sort of non-neurological or physically based episode, and she knew what happens to people in the psychiatric systems if they go wrong. She knew the way I was presenting would land me in the psych ward.

More drastically, I think of the man who ended up in the mental health system during a crisis, and the state of Maine put his cat down and sold his home.

When we have to be so afraid of our psychiatric system…? That’s the result of ableism.

Sometimes I think about all the dead and murdered people too, like Dustin Hicks, a recent one close to home. My chapter just had to write a statement on it. The news outlets declined to even reply to my encouragement to publish all or part of the statement. One news report discussed his mother and reasons why she might want to kill him. None mentioned that he deserved to live, or that his death was a tragedy. We know almost nothing about him.

When we have to issue statements over and over again urging people to report responsibly and call our deaths, not our lives, tragedies? That’s the result of ableism.

I think of all the various intersections we have between other identities, too. We are not a monolith. I think of the many, many people of color with disabilities who face racism and ableism, sometimes with deadly or injurious consequences. I think of the #FreeNeli campaign, and how long it took many of us white folks to start tweeting on it after the initial call for tweets. I think of Neli himself, unjustly incarcerated for being black and autistic, in isolation. The governor finally did issue a conditional pardon.

I think of Kayleb Moon-Robinson, one of the many students of color and students with disabilities disproportionately referred to law enforcement. An eleven-year-old charged with a felony. The school to prison pipeline is real…

I think of those of us who hold many identify facets, like being LGBTQ+, a person of color, a religious minority, as well as being disabled.

When we have those intersections meet in a dangerous way, amplified by multiple marginalized identities, the ableism and other -isms and -phobias become intertwined, and not the result of purely ableism. These intersections matter.

I think of how someone got kicked out of their house by their roommates for being autistic.


I think of history, too. I think of the sordid history of locking people with psychiatric disabilities, intellectual disabilities, and developmental disabilities in institutions…

I think of the nasty history of eugenics. (The .pdf is American and German history of eugenics only, as I lack a college library to find the other physical sources. Also, there’s a typo at one point where I meant to say “Indiana passed the first sterilization law in 1907.”). How it affected so many with disabilities (and other intersections).

I think of how nowhere was physically accessible, how Ed Roberts couldn’t go to school unless he lived in the infirmary.

I think of activists crawling up the Capitol steps to protest and demand the ADA’s passage. Don’t let the black and white photographs in the coverage of the Capitol Crawl let you think that this was long-gone history. We only just hit 25 years of the ADA.

I think of the long, long history ableism has. Ableism is not new.

***

Could I go on? Yes.

I fear being too depressing. I fear a lot of things. Mostly, I am sometimes frightened of the world.

We could stand to be gentler of people still learning the new words that change so much. Ableism is far more than a list of words and we need all the good hearts we can find. Clumsy language on the part of someone who is trying (and who may have communications-based disabilities!) is something to be less concerned about than the dead and wounded around us. Clumsy language on the part of someone who is trying should, perhaps, receive calling in, not calling out.

Ableism seems insurmountable, and there will never be a great sweeping moment where we crush it entirely. But I think we’re making a dent. We’ve come 25 years since the ADA. Seattle has some crappy curbs that Disability Rights Washington is taking them to task for. Ableism still goes on and on. But we’re making a dent. The largest non-profit in the nation dedicated to eradicating autism had its donations drop. Their president is resigning, though this may have been a planned move. We are producing documentaries of our pain and sorrow, of our challenges and stories, of our hopes and dreams.


We have people among us becoming lawyers and professionals and influencing that way. We have others in grassroots advocacy and policy advocacy. We have those whose advocacy is for themselves only, fighting to survive and be heard and respected (and that’s okay). We want our brethren to survive. 

Autistics Speaking Day: Building Hope

Autistics Speaking Day: Building Hope: Kit Mead



My first experience with neurodiversity was something built gradually from the ground up. It built itself around social connections first, and someone driving me to a public lecture on autism and neurodiversity. Gradually reaching out and pulling together a community. It was the beginnings of what would be the disability student group on campus and my ASAN chapter.

It was a revelation, to say the least. I learned about an entire culture.I myself fell into it hard and fast but the community took a while to build locally.

I am proud of what everyone involved in all that has accomplished.

***

The Internet has always been my second home. I started an “autism blog” in 2013. I had been on Tumblr before, but not knowing about neurodiversity and mostly reblogging things like cats.

Autistics have a lot of pain to work through, which I have seen flashing up all around me. We have a lot of trauma and ours is the history of a group maltreated. Having pain to work through is fine.

We do have a community, diverse among its interests and identities. We have more people discovering how their brains work every day. It is important to cultivate a disability identity in people carefully and with kindness. Autistics have a lot of pain to work through.

***

Autism is a neurotype, not a political belief system or other set of beliefs. We share a neurotype. We are diverse. We have pain. We have different opinions. I’ve seen us come together on a lot of issues and part on others, recent though my addition to the neurodiversity movement is.

***

The reason I joined neurodiversity was because someone found me and realized that I could contribute something. They helped me learn, slowly, to create an identity out of disability. I read everything I could get my hands on. I came into neurodiversity when the community was speaking out even louder than ever against groups like Autism Speaks. I embraced it.

I was fortunate. I managed to pick up what words to use and had some talent with writing that lent itself well to blogging. I had someone patient to teach me. I joined neurodiversity because someone helped bring me into it. I have hopes for this community. In some areas, I fear for it. The splits seem wide in many areas.

***

There are many types of advocacy and activism.

For instance: resistance can be self-advocacy. Self-advocacy can be resistance.

If you write just one blog post, you have contributed. If you’re not on the front lines and doing spitfire activism, and are quieter in the background, you have contributed.

Some people would argue that “quiet activists” do no good, but I disagree.

We have room for all kinds of activists and advocates in this community. Some are newer, and perhaps we could learn to handle each other more gently.








Other Autistic People Taught Me What Autism Means (Video)

Oh look a video.

Transcript, though captioned (fairly) accurately:

Rough transcript, captions should be listed at some point on the video.  I wrote in my own and it’s setting the timings?

This is an address to parents and people who care for and assist autistic people.

I have been feeling *more* autistic lately, if that makes sense – just using echoes more, realizing scripts more, thinking about things I do. I mean, I flapped at a cat for five minutes the other day.

To other Autistic people…

I stim more, I am more open… and I that’s because I follow so many people on Tumblr and talk on Facebook a lot with people.

Being around other Autistic people is important.

Being around other Autistic people lets you know you can do things with them and also on your own, when situations permit. It gives you almost an internal permission to let go. When I started the k-pagination blog, I was like “Will only write activism posts and reblog activism posts. Serious stuff.” And now it’s just… I need the joy of being Autistic. I will write posts that might seem a bit silly. I will start tagging with the echoes I always had in my head and never used.

Being around other Autistic people is important.

If you’re a parent or caregiver, reading this, let your autistic kids and adults (if you have legal guardianship or something), be around other Autistic people. Don’t isolate them from neurodivergence. That in of itself can be as harmful as a physical seclusion room.

This is not my usual, long and flowing eloquent and bit detached activism. This is an autistic person asking for people to respect lived experiences. I was like your child.

I climbed trees, I ran around shrieking and screaming all the time, and even if I did now, it wouldn’t make me less than. I did a lot of things in those alarmist documentaries. I am worthy of dignity and autonomy. So are your kids and relatives, whether nonspeaking or speaking or need aides and what level of supports they need.

And other Autistic people are the ones who taught me self advocacy and activism. It was just a label before I met Autistic people I talk to and call friends and acquaintances and respect. Though psychiatrists and psychologists can be useful, other Autistic people taught me what autism means, not them.

And to Autistic people watching this, you have the right to be around other Autistic people and talk and share your experiences, and have validation.