Thursday, July 11, 2019

Being Hyper-Verbal Is A Real—And Disabling—Autistic Experience

Two Vietnamese men, seen from behind, wearing billed caps and squatting as they have a conversation. The man on the right is gesticulating with his left hand
Photo © ePi.Longo | Flickr / Creative Commons
[image: Two Vietnamese men, seen from behind, wearing billed caps and squatting as
they have a conversation. The man on the right is gesticulating with his left hand.]

M. Kelter

Content note: This article discusses suicide risk factors specific to the autistic experience.

I worry that too many people think of hyper-verbal autistic speech as being synonymous with "articulate" or "fast" or as something purely beneficial. This is actually not correct. Hyper-verbal autism is autism, and it is a disability. I want to provide a few details about how it generally works, so that I can draw a line connecting it to what people generally think of, when they think of autism.

I am on the spectrum, and I was fortunate enough to spend a few years working with a specialist who taught me the parameters of my particular way of engaging with language. We found that my verbal processing tends to create difficulties for me when it connects up with three factors: Emotional volume, thought speed, and social pragmatics.

What I am going to describe here is the way hyper-verbal speech works for myself—one, non -representative individual—and the way that these factors are exactly what you would expect to find in the realm of autism.

Some who have children with significant degrees of intellectual disability feel like conversations like this can obscure what they call "real" autism. But this, too, is incorrect. The distinction they are making only manages to cut the common thread that connects varied autistic experiences into a coherent neurological profile.

To explain what I mean by that: there simply is no reason to see different experiences with autism as mutually exclusive, as if they are in competition for territory. Autism is a disability that impacts communication. And because there is predominantly a genetic basis—there are currently 102 genes associated with ASD—you would actually expect for people on the spectrum to be very different from one another. The genetic complexity means that people are taking many different neurological pathways into an autistic profile.

The unifying component of autism is communication, not the many individualized forms communication can take. If you focus only on differences at the expression side of autism—whether someone is verbal or non-verbal—you are going to skip over that essential shared ground. Variations are not invalidating of a diagnosis, they are what you would expect to find in a condition this genetically heterogeneous.

So, that's how the different types of autistic communication link up, but I do want to go into some detail about accelerated language since it is one of the ways that autistic communication happens.

Take that word "accelerated" and think of hyper-verbal speech as an accelerant or a fuel, something combustible that can turn volatile when mixed with the wrong variables (like fire, for example). Then take that accelerant and throw it on a mood.

When words are naturally assembled in such a way that they bring a detailed, granular focus to an experience, it can become quite destabilizing if that experience is an emotion. The words take the volume of a mood and turn them to a much higher level.

Hyper-verbal autism is no joke. It is not an affectation. When anger or depression or self-hatred gets a boost from this kind of added intensity, it can be very difficult to steer in a better direction. The interplay between mood volume and hyper-verbal speech is under-discussed and under-appreciated as a risk factor for suicide in autistic people. Please believe me when I tell you this.

These concerns include risks for children, as well as teens and adults. If you are a parent and you do not believe me when I say this kind of speech can be extraordinarily difficult to manage, ask another parent of a hyper-verbal autistic child. I am quite confident that they will tell you, at least in many cases, that the internal fights these children go through as they battle with their own words; it can be a terribly difficult situation.

If we are thinking of words as a kind of fuel, thoughts are what drive the vehicle. The speed with which words can form and race to new and varied patterns can make concentration a daily, hourly nightmare. I am rarely able to concentrate. Simple tasks are not simple. Every possible thought is instantly ten alternate thoughts that quickly grow to a hundred and then more and when you take that head space into a grocery store or a school test or a job interview, most of every day can feel like an incredibly frustrating obstacle course.

That's internally. Externally, people interpret your concentration issues a lot of way. It can scan as not paying attention, as rude, as flighty, as indifferent, as lacking empathy (because you're too overwhelmed to notice subtle emotions and people, not understanding autism, feel neglected and inadvertently spread myths about empathy) and so on. The concentration issue alone can lead to significant degrees of impact and disability when it comes to daily functioning.

Take the mood thing, the thought thing and imagine how they play out in the middle of a real-time social interaction. It can be extremely disruptive. The impact of this kind of autistic speech can be significant and—due to the hostile reactions it receives from the rest of the word—it can easily lead to depression and social isolation.

Via front-line observation, I can report to you that in social contexts, hyper-verbal autistic speech functions like a chain event. As a child, I had social needs, I liked approaching other kids and sharing my thoughts, but that's now how interactions work. You have to know the social codes and hidden social rituals, and my words blew past all of that like a boulder going downhill. I would approach kids and start talking out of my head in a deluge of monologue, and that only ever drove kids away, or elicited bullying (aka violence). Mood disorders and social isolation ensued. It was a chain event.

To be clear, the answer back then would not have simply been to have me talk less. People tried that, but it didn't take because that's not how autism works. The answer would have had a lot more to do with changing the way people react to autistic differences, but we can take that up in another post.

If you are someone who generally believes that hyper-verbal autistics are arrogant, or have it easy, or that they do not have "real" autism: please know that you do not understand what autism is, and you are not helping autism conversations. What you are doing is are disparaging a group that doesn't need more disparagement. My only hope is that you can sense that I am trying to share good information with you here, and that you do not need to shout at autistics on twitter because they said a thing.

I honestly believe people will have an easier time understanding the autism spectrum the instant they stop creating nonsensical barriers between autistic people and their lived experience, and the ways that they engage with communication. New school, 2019 autism is simply a better conversation to have. I did not like the old one.

Thursday, June 27, 2019

The Kelsey Honors the 20th Anniversary of Olmstead

wheelchair, and a bipap mask; a white man with brown hair in an undercut and a mustache & beard; and a Black man with very short gray hair.
Alice Wong, John Marble, and Leroy Moore
[image: Stylized photo of an Asian-American woman with bobbed black
hair, a motorized wheelchair, and a bipap mask;
a white man with brown hair in an undercut and a mustache & beard;
and a Black man with very short gray hair.] 
There are few better ways to spend the evening than at an event for inclusive housing initiative The Kelsey, in celebration of the 20th anniversary of the Olmstead decision—"the most important civil rights decision for people with disabilities in our country's history"—with an amazing panel of disability advocates: Alice Wong, John Marble, Leroy Moore, and Micaela Connery. We were lucky enough to do just that last night, and now we'll share what we learned with in this lightly edited transcript of our live-tweeted coverage of the event. 

Listening to Alice Wong of Disability Visibility Project talk (with a dash of salt) about why needing supports doesn’t negate innate independence & autonomy. And how public funding of supports keeps PWD like her in the community, & out of institutions. Even when it’s not easy—& she still feels vulnerable.

The annual redetermination process is laced with anxiety for people who depend on it. And it is a poverty trap! She can’t earn more than $2K (which is less than 2.5x the poverty level) without losing benefits. So she has to pass on paying opportunities all the time.

This is not in keeping with the spirit of the Olmstead decision, e.g., a lot of disabled people do not have the freedom to move between states, because anchored to state-specific benefits.

And community based services (HCBS) look very different state-to-state (though there’s never a barrier to institutionalization!). And most states still enable sub-minimum wage for PWD, which keeps the poverty trap cycling hard.

Did you know: People who depend on SSI often can’t get married, because that means their benefits will be reduced? There is no marriage equality for many disabled people.

Recently, a high-profile story of Anna Landre, a Georgetown student who had their support hours reduced resulted in those hours being reinstated. But how many other PWD have support hours arbitrarily reduced without any recourse or resolution?

There are also social and physical barriers to PWD taking part in their legal right to voting, e.g., every SINGLE US presidential candidate’s website is inaccessible to Blind people. IN 2019. #CripTheVote

Every disabled person can have the life they want!

John Marble is feeling a bit abashed in having to follow Alice, which is totally understandable.

John is the founder of Pivot Diversity. Talking about how even though he’s never been institutionalized, he’s always had a fear of institutionalization. Which, turns out, is not actually that irrational, because most autistic people his age & slightly older WERE.

Example: Darryl Hannah was diagnosed #autistic as a child, but was able to evade institutionalization because her mom was able to homeschool her until she was ready to attend school with her peers.

John says that he always feels like he is one step away from losing everything because he’s autistic—and in talking with other autistics, he’s not alone. It is a stark fear, shared with many autistics.

The number of disabled people killed by police, especially PoC, is a bracing reminder of how far we have to go even 20 years after Olmstead and the ADA.

So John does not want Institutionalization to be the path for the future. At the very basic level, PWD have the right to live in the community. Not just reside. LIVE.,

John is now throwing shade on people who use “the voice” when talking to autistic people.

He wants other autistic people to have the right to be DULL and BORING. Per James Baldwin on the bizarreness of perceiving difference as bizarre.

PWD, autistic, and neurodivergent people deserve to be integrated into society and as normal as anyone else!

Now Micaela Connery of The Kelsey is talking about the 20th anniversary of Olmstead, and how everyone always assumed her cousin Kelsey, who was a disabled person with high support needs, should be institutionalized—and how it was a life-long fight for her entire family to keep her in the community.

If you read the fine print behind the ableist parts of Olmstead: No matter how high a person’s support needs are, they have the RIGHT to live in their own damn community. (I may be paraphrasing.)

Living in the community doesn’t look the same for everyone! Whether in the general community, living, employment, school—but the baseline is the same. Everyone belongs.

Even when institutions are surrounded by rolling green hills and aesthetically pleasing environments, when people have no control over their schedule and autonomy, those differences really don’t matter. Institutions sap their residents’ souls.

Now: Leroy Moore of Krip Hop Nation. He used to live in San Francisco, but he got gentrified out.

Poor Magazine has been fighting against institutionalization/eviction of poor people and elders. Sometime successfully, but sometimes landlords blocked. And elders died from the stress.

Under former mayor Willie Brown, San Francisco wanted to get rid of all the public benches. This is trend that’s spread all over the country.

Under Obama, public housing was eroded in every major city. And people with disabilities (PWD) depend on public housing. So how are PWD supposed to get out of institutions if there’s no place for them to go?

Under Housing Secretary Ben Carson, increasing amounts of public housing are coming under non-profit and private companies’ control. So PWD and others who used to live in those communities can’t move back.

One time, Leroy was stuck on the third floor of his building for an entire month because the elevator was out of order. The lawsuit is still pending.

Under former California Governor Jerry Brown, the conservatorship laws undermined access to SSI and independence for many PWD.

Anti-poverty and anti-disability laws are making things harder all over the country. We have people taking housing away from elders because their places are “messy.” What can we do? Poor Magazine has been on the forefront of this issue.

We need funding for public housing and related disability programs so PWD can stay where they live and live where they want to.

Right now, Poor Magazine is working on building housing in East Oakland.

There is basically no low-income housing any more. Leroy Moore feels like he’s hanging on by a thread, and he’s not alone. When the current president pushed to exterminate housing programs, the only person who came out against it was Rep. Maxine Waters.

And it’s not just housing. IDEA, funding for special education, has NEVER been fully Federally funded. People with disabilities of all ages remain under attack in the US.

Leroy Moore has been to the disability caucuses at DNC conventions—and there was no one there. NOBODY. Just a video of FDR. That tells you how much politicians value PWD.

We need to destroy conservatorship law, as it goes against Olmstead.

The one in-need housing population that is really growing is disabled elders. This is a violation of civil rights, and we need to do better.

The floor is now being opened to questions.

Q for Alice Wong on the intersection of disability/Asian people/women. Though she doesn’t have five hours to do properly address the issue, here's the short version: she consistently sees that disability leadership is… white. This has to do with who gets amplified. Which gets in the way of Asian/other POC identifying as disabled.

Disability activism needs to be more welcoming. Alice is wary of being tokenized. She wants to be valued for all of her amazing talents! There are a lot of people who share her identities out there. She wants them to be visible too.

“Fuck the model minority myth!” Alice got a D in trigonometry! The stereotypes of Asian-Americans as model citizens and students and coming from wealth is damaging, and limits Asian PWD from getting mental health and disability supports/community.

Audience member who is Autistic and Black talking about how he was running for a BART train because he was late, then got detained by the transit police because he fit the description of a perpetrator. It was really distressing.

John Marble was asked by a local newspaper about a story on autism and restaurants. And he really didn’t want to be the token white male autistic; he insisted on having an intersectional grouping of autistics.

He ways we have to change the narrative that we project and make it more inclusive. Starting with having autistic people on the boards and staff of autism orgs because most of them (MOST) really do not include autistic people at all.

Alice: EVERY issue is a disability issue, e.g., mass incarceration. And prisons are just another form of institutions/warehousing. There is so much trauma that is created and compounded in those environments.

Immigration is another huge intersectional disability issue, e.g., family separation and the trauma that it creates. Not to mention that PWD are having all of their disability supports (like crutches and other devices) removed as standard procedures. We need more solidarity.

Disability rights are civil rights are human rights.

Leroy Moore: Moses had a disability. So PWD have always been here. The problem is that people are just not doing their homework.

Also, reports of police brutally about PWD/people of color are generally not done by or informed by PWD/people of color. We need community-informed resources.

Leroy Moore: Poor Magazine has a workshop called “Never Call The Cops.” These are the kinds of resources disabled people of color need, these resources save lives. This is what the community needs, NOT more police training.

Elders are dying on the streets. PWD make up a huge proportion of homeless people. He’s been to cities in FL where people were kept in cages on the SIDEWALK. We need to think outside the box.

If you want disability justice, go to Sins Invalid.

Micaela Connery: Disability is a lens that is too often missing from formal social justice and housing policy work, even when race and SES lenses are applied. This needs to change.

Alice Wong: if allies want to think of themselves as co-conspirators, they need to support the orgs that are already doing the work, like HEARD and the Autistic Self Advocacy Network (I missed the first org noted, so sorry). Props to ASAN Director Julia Bascom, and see their Resource Library.

John Marble: Autistic and disabled people are the experts in their own lives! Imagine what could happen if even 1% of the money splashed all over autism causes and orgs was given to the autistic people who know what to do with it to change autistic lives for the better?

John recently took on Fiona Ma for spewing ableist crap all over the disability caucus at a Democratic convention.

John desperately wants radical young autistics to show him where he needs to push the political envelope! What is he missing?

Alice is giving props to #ActuallyAutistic Greta Thunberg and her lack of f***ks when it comes to doing what is right for the planet and humanity’s future.

She is also out of patience with gatekeepers who are getting in the way of disability and civil rights justice. We need better leaders.

Leroy: we need a change in the status quo! We need to support politicians like @RepMaxineWaters who actually do push back and do the right thing. Even when it hurts.

Micaela to Alice: what does good ally ship/co-conspiratorship look like?

Alice: Acknowledge what you don’t know! Find out more about what ableism is, in terms of everyday experiences and also systemically. Read up. Follow these panelists right here.

  …and provide material support. Show up to events. Buy the books and CDs. Connect with actual disabled people. Immerse yourself. Alice loves the people and the culture in the Disability movement and she thinks you will too.

Leroy: Krip Hop Nation is having a Disabled African Musicians tour in July! Support it.

Over and out! Thanks everyone.


Additional Event Coverage and Links: 

Alice Wong: The Olmstead Decision & Me
The Kelsey: Reflecting on Olmstead Panels