11 January 2012

Tired

Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff.

An accessible audio recording:


Tired


I'm tired of being misrepresented. I'm tired of seeing the principles of self-advocacy misrepresented. And I'm tired of seeing the autism rights movement misrepresented.

Let me be clear. I'm not talking about allies, or about people who were just thrust into Autismland and don't yet know much, if anything, about the constant conflicts that erupt here. This isn't about you.

This is about people who write things like John Elder Robison's "Looking forward at the autism spectrum," or Mark L. Olson's "Autism's Fly-Over Population," or the comments on Susan Senator's "The Parents Vs. The Autistics." It's been a week of frustrating, misleading, and outright hurtful writing.

And I'm tired.

I'm also a little bit furious and a little bit frustrated and desperate to write something. My hands are numb right now, and it has nothing to do with my feelings. It's kind of cold in here, actually.

Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go.

And Susan Senator is the non-Autistic mother of adult Autistic son Nat, as well as the author of Making Peace with Autism, The Autism Mom's Survival Guide, and Dirt (a novel.) I don't always agree with her, but she writes well and is genuinely interested in engaging and dialoguing with Autistic people as equals rather than interesting curiosities. Her most recent article, linked above, engendered a spat of disgusting, disturbing, and sometimes outright frightening comments, mostly from non-Autistic parents.

I think I've read enough disgusting, disturbing, and frightening things last week. I've been triggered pretty badly a few times. In fact, I'm slightly worried about opening the tabs next to this one in my browser, where I have those three pages open, just to get the quotes for this post. If you've read this blog before, you've probably caught a significant change in the tone and style of this post from previous ones. And it's because I'm sick and tired of stuff like this.

(I'm inserting a second trigger warning here: a long list of direct quotes of incredibly ableist and possible very triggering stuff.)



"High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population."
-Mark L. Olson, LTO Ventures and parent
Wrong.

All self-advocates are not "high-functioning autistic and Aspergers" as Olson so arrogantly generalizes. The assumption that Autistic people who do things like blog or use speech must therefore automatically be "high-functioning" is fallacious at best and actually harmful at worst. I know firsthand of not a few Autistic people who cannot consistently perform activities of daily living such as cooking, cleaning, keeping a schedule, traveling, or maintaining hygiene without assistance from a family member, friend, or aide. Yet some of those same people often face ridiculous assertions that because they must be so high-functioning or "just Asperger's," their advocacy clearly is illegitimate and unfounded.

Other self-advocates might never be called things like "high-functioning" were you to meet them in person. Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials and expresses her opinions rather eloquently in the media and elsewhere, does not speak and travels everywhere with an aide. She communicates by typing via alternative and augmentative communication. (By the way, Amy prefers to refer to herself as"autistic" rather than "person with autism." That too is not something that only "high-functioning people with Asperger's" do.)

And Sequenzia is not alone.

Self-advocates Larry Bissonnette and Tracy Thresher are both non-speaking Autistic adults who communicate via AAC. In childhood, they were presumed mentally retarded and ineducable. They were in segregated classrooms and never mainstreamed or integrated with students without disabilities. Bissonnette and Thresher starred in the 2011 documentary Wretches and Jabberers, which follows their advocacy. Both men have served on the Board of the Autism National Committee, an organization that includes both non-Autistic and Autistic people in the fight for civil rights, and whose constituency has traditionally been non-speaking Autistic people (or Autistic people with limited speech) and their families.

They too are not alone in fighting for Autistic rights. Sequenzia, Bissonnette, and Thresher are only three of innumerable non-speaking Autistic people who are self-advocates. The majority of non-speaking Autistics face even more discrimination than do those who have learned to use speech, and by no means are they excluded from the model of self-advocacy, self determination, and autism rights. Olson's assumption that all self-advocates are "high-functioning autistic or Aspergers" is grossly inaccurate and egregiously hurtful.

Non-Autistic parent Todd Drezner, in his 2011 documentary Loving Lampposts: Living Autistic, further explains why the use of the disputed "low-functioning vs. high-functioning" dichotomy is invalid and not useful when discussing Autistic people, and especially when dismissing so-called "high-functioning autistic self-advocates." In one segment of the documentary, Drezner interviews an elderly non-Autistic mother to an adult Autistic man in his 60s. "Lyndon is employed and lives by himself in his own apartment," says Drezner. "Is he high-functioning? His speech is severely limited and he needs support to perform life's daily tasks. Is he low-functioning? And would it make any difference at all in Lyndon's life if you could answer these questions?"

And what about people like Dora Raymaker? A board member of the Autistic Self Advocacy Network (ASAN) and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), Raymaker does speak but prefers to communicate by text-to-voice. When she speaks, her words are not always articulate, as you can hear in Loving Lampposts: Living Autistic, and could lead the uninformed -- or people like Olson -- to make the assumption that she is "mentally retarded." Clearly, that is not the case.

Olson's second mistake is his blanket assumption that the principles of self advocacy seek to exclude "parents, family, caregivers and outsiders." That is not true. Self advocacy seeks to ensure that Autistic voices are always heard and prominently so in any conversation about autism, along with the voices of parents, family, caregivers, and outsiders. Autistic adults welcome non-Autistic allies. People like Todd Drezner, Susan Senator, Kristina Chew, Kim Wombles, and Amy Caraballo are living proof of that. (And again, these names are only a very representative few of the innumerable allies, many of them non-Autistic parents of Autistic children, and some of children who might be described as "low-functioning" or "severely autistic" -- insert a collective gasp of "WHAT REALLY THEY'RE NOT PARENTS OF ASPIES?" here.)

The principles of self advocacy are not that only disabled people can speak for disabled people, but that they must be involved with any advocacy. "Nothing about us without us" has been a motto of disability rights for a long time. There is nothing in that statement that suggests that non-disabled people have no right to be part of advocacy. What is at stake is that the most important stakeholders -- the people for whom the advocacy is occurring -- are routinely excluded, marginalized, and treated with the kind of contempt that Olson displays.

We, as Autistic people, whether we have been called "high-functioning" or "low-functioning" or both (at different times in our lives), have the right not only to advocate for ourselves individually, but for the rights and needs of Autistic people at large.

What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself? And what parent would not be proud of his or her child advocating for other Autistic people? When a non-Autistic sibling of an Autistic child starts an advocacy or awareness initiative, parents everywhere applaud. Why do you react with horror when Autistic youth and adults want to make the world a better place for your children? That's what involving Autistic people meaningfully in advocacy means. We're not in it for ourselves. We're in it to work toward a world where all Autistic people, children and adults, speaking and non-speaking, can live better, happier lives.

Why would you oppose that?

"The image of autism is going to get lots of attention as more children with autism age into adulthood. Those who don’t see autism as a disability are talking about HF or Asperger’s. The DSMV slated for 2013 will officially expand the spectrum to include Asperger’s and my fear is that 'Aspies' will become the face of autism. It’s much less disturbing to talk about autism and include who seems, outwardly at least, like the boy next door. It’s easier to believe that autism has always been around when we’re talking about someone with amazing abilities or high levels of intelligence combined with some quirky behaviors. My friends with severely affected children have tremendous fears about the future. They clearly don’t need their children further marginalized by those who advocate just for awareness and acceptance."
- Anne McElroy Dachel, Age of Autism

"When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties."
- John Elder Robison, Autistic author and parent of an Autistic son

Here comes another grandiose misconception. Autistic self-advocates, with some exceptions, are not people who "don't see autism as a disability." If you don't believe me, read closely the following sentences:

1.) I am Autistic.
2.) I am a self-advocate.
3.) I believe autism is a disability.

If you didn't catch that, please scroll up a little and read that again.

I do believe that disability is entirely defined by society, but because of our society and our history, yes, being Autistic means that I am disabled. All Autistic people are disabled. Some Autistic people might be more disabled than other Autistic people, but if you are Autistic, you are automatically disabled.

The people to whom McElroy Dachel appears to be referring probably belong to an "autistic supremacy" or "Aspie supremacy" kind of ideology, the kind of people who believe that being Autistic means they are better, more evolutionarily advanced, or more morally upright than non-Autistic people.

Most self-advocates aren't supremacists. We're not advocating for "Autistic supremacy." We just want equal rights. And yes, rights means services. It means accommodations. It means therapies. It means appropriate education. It means employment opportunities. It means housing opportunities. Rights isn't a vague euphemism for "we don't need help of any kind."

It's a bold, revolutionary statement demanding that the right of all Autistic people to equal access and opportunity as non-Autistic people be honored. And how is that right honored? At least partially, through appropriate services and accommodations, ad nauseaum. We have the right to receive services and accommodations without which we could not have equal access and opportunity. Some Autistic people would benefit from more services or accommodations, and others would benefit from very few.

Advocating for rights is not merely advocating for "awareness and acceptance." McElroy Dachel misses the point entirely. We want all Autistic people -- including non-speaking Autistic people, including Autistic people with self-injurious behaviors, including Autistic people with destructive or violent behaviors, including Autistic people who need an aide 24/7, including Autistic people who cannot complete higher education, including Autistic people who cannot travel on their own, including Autistic people who have not yet learned to communicate with non-Autistic people -- to have better lives. And that very often means better services and accommodations.

McElroy Dachel is wrong. And so is Robison.

"Could it be that on the autistic-side-of-the-dichotomy, they are not able to see/perceive/understand/know well-enough outside of their own specific-ability-disability to accept the parental-dimension of autism?"
- Barbara, self-identified as not a parent
This one just blows my mind. I can't win.

No matter what I say, it can't be me; it must be "just my autism talking," as Autistic writer Melanie Yergeau puts it.

So firstly, everything that I say or write is suddenly de-legitimized because (insert sarcasm here) obviously, an Autistic person is unable to understand someone else's perspective or that someone else might have different challenges or needs. Absolutely and unequivocally wrong. At least one study (I believe there were more, but without citations, [and I'm too tired to find them now] I don't want to list anything else) has demonstrated that Autistic people not only experience empathy, but in certain cases, experience more empathy on average than non-Autistic people.

And empathy has a lot to do with perspective-taking, doesn't it? I'm a writer of fiction as well as of this blog. (Currently working on my fifth and sixth novels simultaneously, in fact.) I of all people should know right away that the answer is yes. For one, in my writing, I seek to humanize all of the characters -- and I write crime novels that often focus on religious-inspired terrorism. (Disclaimer: I do not support or condone any form of terrorism for any reason. It's sad, but after the NDAA, that has to be there.) I want the readers to be able to empathize with the characters. ...and people like Barbara seem to think quite horrifically that people like me are incapable of perspective-taking and empathy.

It's sickening and dehumanizing in the worst sense. For my part, I think Barbara is the one lacking empathy here. Sorely lacking, at that. The irony never fails to astound me.

Secondly, her statement is so patently untrue. There are Autistic people who are also parents of Autistic children, such as Melody Latimer or Paula Durbin-Westby or Phil Schwarz (Autism National Committee). So obviously, Autistic people can understand and even appreciate from personal experience, "the parental-dimension of autism." By the way, all three people listed (who again, are only three people out of innumerable possible names) also happen to be self-advocates.

Thirdly, we Autistic people are more keenly aware of the diversity of disability in our own community than anyone else. How it could be otherwise? And as I've noted repeatedly in this rant of an essay, advocating for rights for Autistic people isn't just advocating for the rights of some Autistic people or of the so-called "high-functioning autistic or Aspergers" people. (Where are those people, by the way? I'm beginning to think they're almost mythical. At the very least, as Todd Drezner [again, a non-Autistic parent of an Autistic child] observed, it can not only be difficult if not impossible to define what makes someone high vs. low functioning, but also not particularly helpful in helping an individual person.)

"I think the dividing line in the autism community is ultimately if a person can achieve those goals of independence. At some point when a child is in 'transition' the parents (finally) have to acknowledge that their child will or will not meet the criteria for adult social service support (medicaid, SSI, and services). At that point, the life paths will differ between those that are 'high functioning' and those that need government supports."
- Marjorie Madfis, parent
Again, it's not so clear-cut. Kathryn Bjørnstad, one of the co-creators of Autistics Speaking Day, cannot travel independently. Kassiane Sibley, a highly articulate Autistic advocate, cannot cook and clean consistently for herself. Other Autistic advocates have noted that they do not live independently and or receive any number of government support or services. Most of the same people are blanketly labeled "high-functioning" in a frightening attempt to de-legitimize their voices.

If you blog, then you're obviously high-functioning and very fortunate. Therefore, you obviously have no place advocating for people who are far more disabled than you are.

That's how the assumptions go. And they're just that. Assumptions.

Blogging does not equal independent living. Writing does not equal using speech offline. Advocating does not equal being "high-functioning autistic or Aspergers." A large number of people who get called "high functioning" actually need government supports. And a large number of those people are unable to get the supports and services they need.

"Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it."
- Marjorie Madfis, parent
What if she's happier playing Pixie Hollow? What if playing Pixie Hollow is a self-calming coping mechanism for anxiety, sensory overload, or social overstimulation? What if she, like a non-Autistic student in my computer science course this semester, simply sees no use for Facebook? What if she doesn't have friends who value her for who she is as an Autistic person?

Did you ever think to ask those questions, Marjorie?

Most times, most of those "behaviors" are our way of coping with a world not meant for people like us. It seems another lesson in empathy could be used here.

"So, the argument from HFA’s that the problem is the expectations of society, that people learn to mesh into societal norms of manners, eye contact, and reciprocal language (body and verbal) seems just that……A tantrum over not having it their way……"
- Yvette Hansen, parent
Can't win. No matter what we say, anything that challenges the status quo must be attributed to some terrible expression of our autism -- in this case, throwing a tantrum. A tantrum. It's reading ableist comments like this that sorely tempt me to actually throw a tantrum. But I don't. I write these articles instead, hoping (maybe in vain) that people like the ones I've quoted will read them and alter their perceptions, bit by bit.

(I won't even bother addressing the HFA thing here. That horse has already been beaten to death in this piece.)

But all I see here is another profoundly disturbing attempt to de-legitimize the voice of any Autistic person who expresses his or her frustrations. And all those expressions are met with such hostility and condescending accusations as Hansen's, which inevitable evokes only more frustration.

It's hard enough living a world where it is expected that a treatment protocol or behavior plan or intervention for an Autistic child or adult is in place ultimately to eliminate "Autistic" behaviors and replace them with "typical" ones. To make the recipient of those types of therapy appear and act as non-Autistic as possible.

That's not saying that all services and therapies are bad; many are very good and sorely needed -- the kinds of services, supports, and therapies that teach coping skills, cater to emotional needs, address sensory problems, accommodate in a classroom, assist with employment, and provide strategies for coping in social situations with non-Autistics. But these practical considerations are not the goals of most therapies or services.

So when we grow up learning that to be normal and healthy is to not be Autistic, when we are told to suppress obviously Autistic behaviors like echolalia or stimming, when we are sent to social skills classes for the purpose of making us appear more "normal" rather than giving us tools to better interact with non-Autistics, it can get very frustrating indeed. Hansen's utter lack of empathy for the enormous difficulties and anxiety that Autistic people face -- and especially the very verbal Autistic people who often get called "high-functioning" -- because of the pressure to pass is telling.

It hints at the deep, systemic ableism that penetrates not just society at large, but also an unwittingly large number of the parents of Autistic people.

"At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten [from the New York Times article "Navigating Love and Autism"] who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as 'typical' Americans."
- Mark L. Olson, LTO Ventures and parent
Actually, the majority of so-called "high-functioning and Aspergers" Autistic people are often unable to access or receive the vast majority of supports and services. I don't understand why so many people automatically assume that the Autistic people who speak and or can go to college are also the beneficiaries of most supports and services. Because for those Autistics, the ones whose disability is far more invisible than visible, asking for any kind of support or services usually results in a metaphorically slammed door.

"You're asking? You? Well if you can ask, then you obviously don't need any help."

And whoever said that we wanted to live the exact same lives as non-Autistic people? Equal access and opportunity means exactly that -- access if desired and when desired, and opportunity if desired and when desired. Most Autistic people don't socialize the same way as non-Autistic people. Sometimes we have a different sense of humor. Sometimes we like to eat, work, and play in very different ways. So obviously, we're not advocating to live the exact same lives as non-Autistic people.

We simply want to be able to access a theme park. Or a movie theater. Or a church. Or the RMV. We simply want to have the opportunity to go to college. Or join a civic organization. Or vote. Or work in a field related to our skills and interests. Or live in an apartment or house where we feel safe and at home. And what's wrong with that? What parent wouldn't want barriers for their Autistic children eliminated? Olson's line of thinking seems twisted in incredulously ironic ways.

"Some disability self-advocates argue [that my daughter's] only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person."
- Mark L. Olson, LTO Ventures and parent
Um, no. The proposed Home and Community Based Services waivers under Medicaid, which you can read for yourself right here directly from the federal Government Printing Office, have no such stipulation about living such a distance from another disabled person.

They state that a home or community based setting
must be integrated in the community; must not be located in a building that is also a publicly orprivately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability as determined by the Secretary [and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.
The proposed regulations further state that
A setting that is integrated in the community is a setting that enables individuals with disabilities to interact with individuals without disabilities to the fullest extent possible. Further, we believe that such settings do not preclude individuals’ ability to access community activities at times, frequencies and with persons of their choosing. Such settings are not segregated based on disability, either physically or because of setting characteristics, from the larger community. In addition, such settings will afford individuals choice in their daily life activities, such as eating, bathing, sleeping, visiting and other typical daily activities.
These do not mean that a group home, a residential institution, or a closed campus setting could not receive government funding. Such settings will still be able to receive funding from any number of other sources.

What they do mean is that a home or community based placement is one where the person is not placed on the basis of being disabled, as in an institution or group home. A place that is not essentially a ghetto, segregated from the community, solely for disabled people. That's all. It says absolutely nothing about choosing to interact with, become friends with, or voluntarily choose to live with or on the same street as other disabled people. In fact, many of us Autistic adults like to be around each other. It gives us a sense of, you guessed it, community.

And as aforementioned, there are a large number of Autistic self-advocates who do in fact receive home-based services, including the services of part and full time aides to assist in activities of daily life. That can happen no matter where the person happens to live. So living in one's own apartment, a la Lyndon from Loving Lampposts: Living Autistic, is not mutually exclusive from receiving appropriate services and support.

"But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our 'fly-over' population. Their story deserves to be told too. They deserve the right to choose how they want to live."
- Mark L. Olson, LTO Ventures and parent
Suddenly we are the ones who resist progressive thinking and innovation? Quite the contrary. We are advocating for more inclusion, more integration, better access, and more opportunity. Equal rights. The right to self-determination. The right to receive appropriate supports and services. The right to live in a fully integrated community setting -- with non-disabled and disabled neighbors -- or to choose, of one's own accord, to live in a setting like a group home.

And there have been a number of initiatives, many of them by Autistic self-advocates, to create progressive, forward-thinking workarounds to challenges with regard to employment, higher education, and even aviation security procedures.

I think we have here a case of selective vision. Censored and redacted vision, perhaps even.

"As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become. This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing 'autism' as a euphemism for 'eccentric geek,' or, 'genius,' which is [sic] most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend. At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are not generally able to speak for themselves. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception."
- John Elder Robison, Autistic author and parent of an Autistic son
Maybe not to you. But in my experience, most people I've encountered picture a non-speaking child in a corner growing up to be an adult in an institution when I mention autism. Most people don't actually believe me when I tell them that I'm Autistic. (And I was diagnosed by a neuropsychologist who specializes in the autism spectrum and sat on the board of an autism organization.)

Furthermore, two studies, which you can read here and here, have shown that not only is the rate of intellectual disability in Autistic people far lower than it has been assumed to be for decades, but that intelligence (or IQ, more specifically) is regularly underestimated in all Autistic people, both those with the Asperger's label and those without it. So it seems that Robison is a bit behind in his facts.

In my experience, as an Autistic person with fairly invisible disability, I am not the face of autism. People do not look at me and assume that I am Autistic or associate my behaviors with being Autistic. When I disclose, I am frequently met with disbelief, dismissal, or denial. There has been very little change in perception of autism and what it means to be Autistic. And even less change toward the positive -- of viewing all Autistic people as neurologically different from non-Autistic people, not diseased or disordered, but genetically and phenotypically divergent. Sometimes in disabling ways. For many, in severely disabling ways. But being Autistic is not a negative or unfortunate or bad or defective or lesser or inferior way to be human. It's a different one.

"Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions."
- John Elder Robison, Autistic author and parent of an Autistic son
Again. Whoever said that Autistic self-advocates, who again, are not homogeneously "high-functioning autistic or Aspergers," collectively deny that autism is a disability? Most of us are the first to recognize that being Autistic means being disabled.

And how can Robison not see how awfully offensive and insulting this statement is? So whenever a highly verbal Autistic person talks, he or she "harms" the cause. That's about as true as saying that whenever a white American woman convert to Islam who does not wear hijab speaks about issues facing Muslim women, she somehow unwittingly harms the cause of advancing civil rights for Muslim women. Is she any less Muslim than a Saudi woman who wears a face-covering niqab or a Pakistani woman from the tribal Pakhtunwala? She may not look stereotypically Muslim or behave (in this case by not covering) in stereotypically Muslim ways, but she is equally Muslim. Her voice is equally valid and equally important.

Autistic people who are not visibly disabled are still Autistic. Just because the average layperson would not immediately assume that I am Autistic does not mean that I therefore have no right to speak about my challenges or the challenges of other Autistic people. In fact, if I do not speak, if I stay silent, then the world will never know that Autistic people are as diverse in our being Autistic as Muslim women are in their being Muslim women. The more Autistic people who speak (literally or metaphorically), the more advanced our cause will be.

Whether it is Amy Sequenzia or me, not speaking is infinitely more harmful toward the autism rights movement than speaking.

"The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled. Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix."
- John Elder Robison, Autistic author and parent of an Autistic son
Actually, it is because they are discriminated against. Autistic people are routinely discriminated against because of their disability. Autism does not prevent a person from being able to work in a meaningful job using his or her skills and abilities. But discrimination does.

Any Autistic person, with appropriate supports, services, and accommodations, can work in a job using his or her skills and abilities. Some Autistic people can work in professions that might be considered impossible, such as in academia, the law, or medicine. Some might work in stereotypically geek professions, like in computer science or other technological fields. Others might work with animals, or in offices, or doing research in obscure but oddly specific fields. Autistic people can do just about anything non-Autistic people can do.

Can every individual Autistic person do any possible job? No. But neither can any non-Autistic person selected at random.

If a person who is perfectly capable and qualified for a job is not hired because he didn't make eye contact during the interview, and he doesn't make eye contact because it is infinitely easier for him to process what is said to him if not making eye contact, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she doesn't communicate with speech, but can do the job without using speech, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because he needs a few minor accommodations and the employer doesn't want to deal with them, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she needs an aide to accompany her, that's discrimination.

Robison is wrong.

And he's wrong again -- we understand exactly why autism is disabling. It is disabling because of the society in which we live. Let me quote from an earlier article, "Disability is a Social Construct: A Sociological Perspective on Autism and Disability."
Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.
It's perfectly understandable and perfectly explainable. There's nothing mysterious about it.

But I'm tired of explaining away misconceptions. I'm tired of picking my jaw off the floor after reading such outlandish accusations that I'm throwing a tantrum for not getting my way, or unable to empathize with other people's perspectives. I'm tired of seeing such incredulous statements by people who ought to care very deeply that there are other people, including Autistic self-advocates, trying to make the world a better place for their children. And by people who ought to understand a lot more than they do, as evidenced by their harmful and insulting assertions.

Are you tired, too, now? Because I am. And a few days ago, I almost threw in the towel. Because doing this is rarely rewarding and rarely satisfying. It rarely leads to closure and rarely creates lasting or meaningful change. It's wrought with frustration and disappointment, and frequent personal attacks. That's not just projecting either. It actually happens, and in public, too. Thoughts of leaving the hard work to other people crossed my mind. Maybe other people could deal with all of this. Maybe other people could accomplish things, and I could sit comfortably from the sidelines and applaud them when they received their due rewards. I don't have to do anything, after all. I almost made that decision.

But I didn't. I'm still here. And I'm tired. But I'm not defeated. And I'm far from done.

42 comments:

  1. Oh my gosh wow this is so good!! It's so nice to see someone reading this stuff and actually taking the time and brain to SAY something instead of completely melting like I do.

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  2. I feel the same way. It is tiring. Thank you for writing this.

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  3. Thank you for this, from a very tired parent whose head is spinning re: the need to educate on the topics above. I do hope this post leads to more learning.

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  4. Excellent article. It is sad that the currently-abled need such things spelled out in so much detail, but they do, and you've done a brilliant job.

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  5. "Because for those Autistics, the ones whose disability is far more invisible than visible, asking for any kind of support or services usually results in a metaphorically slammed door." - that is precisely why I am not, and likely never will bother to try to be diagnosed.

    I don't think we've met, but I applaud you for writing this. I can only hope that some of the people that need to hear this will actually read it.

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  6. This. This. A hundred thousand times this. I've had to stop reading a lot of autism-related blogs and articles because it's become an enormous trigger for me. And of course, if I speak up, then I'm automatically written off as HF, angry-at-the-world, overzealous, not-getting-it, etc etc... you know.

    I really appreciate this post.

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  7. As the non-autistic (debateable) parent of a 23 year old daughter with autism I applaud you and your efforts at continuing to fight so that all may be heard. For years now I have been struggling with not being a handicap to my daughter and your words are heaven sent. I feel that you are teaching me important lessons between being an advocate or an ableist. This is second to another great lesson I have had to learn along the way which was to move from emotional outcries to level headed advocacy. Please for the sake of all who need to hear your message...Never Give Up! With respect, Rosie (Lena's mom)

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  8. As an autistic man in his mid-20s, I greatly appreciate your writings! However, I am wondering how you would address one issue in particular.

    Even though it is more difficult for me, I have made it a habit to force myself to make eye contact in conversation. The most legitimate-sounding argument for this preference is that psychological research suggests those who do not make eye contact are more likely to be lying. How would you address this?

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    1. Hi Anonymous -- Autistic woman in her 50s here! My auditory processing difficulties are such that I cannot make eye contact when I'm trying to listen or to formulate a response. What I do is simply to tell the other person that I have a problem with my hearing that makes me unable to process visual input at the same time, that I have to look away in order to listen carefully, and that if I'm looking away and looking very serious, I'm actually listening quite intently. This usually works for clearing up potential misunderstandings -- at least with people who are open-minded enough to realize that people process things differently. As for the rest -- well, at least I've let them know where I'm coming from. If they choose to not believe me, it's their problem.

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    2. Anonymous, I an autistic woman in my late 30s and when I was beginning my career, I was told how important it was to look people in the eye. I took that literally and forced myself to almost never break eye contact, which you can imagine probably made quite a few people uncomfortable! I've had to unlearn this behavior and look away more often instead of intensely staring. My humble suggestion would be that you don't have to look them straight in the eye; often times most people aren't even looking directly at you. Even just a glance in their direction (sometimes for me looking at the eyebrows or toward an ear can help) is enough. But like Rachel said, whatever works for you is the most important.

      - Hanne

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    3. Hi Anon. I'm an autistic person in my late 20s, and also have eye-contact/auditory processing difficulties. My solution is my glasses. Of course, this won't work if you don't wear glasses, but I don't have perfect vision and need to wear mine when I'm doing anything important that needs close-up vision--like, say, an interview. I find I can focus on the top rim of my frames without impeding my auditory processing, and as long as I'm facing the person I'm speaking with they generally cannot tell I am not making eye contact. Alternately, staring at their jaw or hair seems to do the trick.

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  9. I came here from the TPGA Facebook page. I've stopped going to many blogs, etc, but I thank you for writing. Reading posts like this has changed the way I think and relate to my son as well as what I hope for him.

    You said, "What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself?"

    One answer is that an anxious parent might not want their child to advocate out of fear. That's something parents have to work through and grow in. It's probably worth remembering that as humans, we all have our frailties and challenges.

    Dixie, tired as well

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  10. I wholeheartedly agree. Thank you for these thoughts. I shall share them widely.

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  11. Quick question to "Anonymous" (above) regarding this eye contact research: was this study done across many different cultures? I recently learned that in Japanese culture it is considered offensive to make eye contact, especially with someone from a higher social class. This leads me to believe that the way we use eye contact (and perhaps other aspects of body language) might have more to do with learned behaviors than with inherent human tendencies. Perhaps some of us just learn things differently? I also have trouble making eye contact with people; I believe it's because I grew up home-schooled with very limited opportunities for socialization. In my adult life, I started learning much more about the expectations and perceptions of this (American) culture, and I've had to force myself to meet those expectations when I know it will benefit me (e.g. making eye contact in a job interview). However, I think it would be wonderful if we could work to create a more tolerant and open-minded culture. It would be wonderful if a person could get a job just by being qualified for that job, and throw any other factors out the window. This doesn't just apply to autism; this applies to every kind of perceived difference, to every kind of bias. We've made some progress regarding racism and sexism (although there's still more to be done); the entire disability movement has been, and continues to be, phenomenal; but what about classism? What about ageism? How many of the homeless or the elderly would find it easy to get a job? What about religious freedom and freedom of expression? How many people could get a job in this country if they wore a turban all the time? What about our right to just live and let live?
    Sorry, that became kind of long. Basically, I meant to say that I empathize with your difficulty. :)
    Also, I really, really appreciate this entire article! I've recently become involved in mental health advocacy and self-advocacy, and this article very articulately expresses so many of my frustrations. "Nothing about us without us!" Indeed. :D

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  12. Hi Lydia. Nice to find your blog. I'm the parent of an Aspie teen and am on the board of the AANE. I agree that the points you make are important.

    It's not clear to me that the people you quote necessarily hold all the assumptions you discuss (granted, I'm reading their quotations out of context). They may be receptive to your points.

    Many people in the autism community (whatever that means) seem to me to be aware of the limitations of the high/low functioning dichotomy, for example, and how misleading it is. A three-dimensional model that allows for the huge variation of functioning across all of life's domains would be more instructive. (This is one of the problems with the proposed DSM changes: how can a couple of numbers capture it?) But what would work? Part of the problem -- not so much for bloggers -- is the space limitations on what's published. Writers of op-eds etc don't have room to explain these issues every time: they have a sentence to say something that needs ten sentences. "Autism community", which I just used above, is another example. What is the autism community? There isn't room to qualify everything.

    Parents' anxiety that their own child may be unrepresented or misunderstood in the public discourse seems to me valid. This is not to say there should be limitations on who gets to speak, but that all advocates can acknowledge the range of autism manifestations and issues and that self-advocacy isn't yet an option for all. Inevitably, many autism advocates are not themselves autistic (or autistic enough) (or too autistic) (or whatever) and may well end up saying something that frustrates others. I occasionally write on these issues and I can pretty much guarantee I'll inadvertently annoy some people, not I hope because of thoughtless assumptions, or ignorance necessarily (although I'm no expert), but because these issues are minefields and good faith isn't enough to avoid stepping on the mines from time to time. Ideally, the conversation is a learning experience for everyone involved.

    Lucy

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  13. Oh and in response to Anonymous, regarding eye contact, check out Pamela Meyer on the TED website. She's given a brief TED talk on Liespotting (also the title of her book). Apparently the psych research shows people are MORE likely to make eye contact when lying (it's part of the attempt to make the lie convincing). This isn't how it's generally perceived of course, but we can start educating people that eye contact isn't all it's cracked up to be. And for the sake of pragmatics, momentary eye contact can be enough to show people you're listening to them and addressing them.

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  14. What a wonderful article you wrote and I really appreciate how you created an audio for the article too!!

    Keep up the great work :) !!

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  15. very interesting and well organized. You have made several good points, employment is what I am most interested in and I disagree with Robison as well. The issue of employment is a social issue. Many employers are in a state of stuck and stick to the 'template of employable persons' created by a society that is rigid, over regulated and filled with discrimination leading to oppression.

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  16. @Lucy

    Um, why would they say it if they don't think it? And the views that Lydia gave examples of are hardly rare-they're things you can see everywhere. We're straw-autistic'd and NotLikeMyChilded to death every time we say ANYTHING.

    @Lydia

    SO MUCH THIS THANK YOU.

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  17. Thank you! For years I've been working with the "Olmstead" crowd and I have to say, all of the population affected by Olmstead is at least perceived as low-functioning and/or has high service needs. That's why they've been forced into segregated settings to begin with. The services that we're trying to make available in the community - personal care aides, behavioral supports for people with dangerous behaviors, etc. - are by definition the ones that people previously thought could only be provided in institutions.

    I've heard parents testifying against the closure of state hospitals, saying stuff like "my son could not possibly live in the community because he's not only mentally ill, he's also blind." But if his blindness is preventing him from navigating the world, it's because he became blind in the institution and he never had the opportunity to learn to orient himself without sight.

    Also, what really gets me is when people use, as evidence that someone is severely disabled, behaviors that I also have and that few people even notice or complain about because I'm globally perceived as having only a mild disability. I have self-injuring behaviors. They're not as severe as some other people's, but they're significant enough that they'd be the subject of "intervention" if I were perceived as LF. Plus it's important to keep in mind that my SIB would most likely be far worse if I lived in a typical institutional setting; just hearing a lot of background chatter while trying to focus on something else can, if it goes on long enough, make me open up several gaping holes in my scalp. I don't see why my empathy for other people with SIB - empathy based on actual things I have in common with them - should be considered invalid just because those other people don't speak or have an intellectual disability. If those differences are sufficient to make it impossible for me to speak for them, then what does that say about parent advocates, who have even less in common with them?

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  18. As an NT parent of a 10 yr old with Asperger's, I find your "rant" enlightening. I agree wholeheartedly with MOST of what you say. However, I think you missed the mark when you wrote the following:

    "What if she's happier playing Pixie Hollow? What if playing Pixie Hollow is a self-calming coping mechanism for anxiety, sensory overload, or social overstimulation? What if she, like a non-Autistic student in my computer science course this semester, simply sees no use for Facebook? What if she doesn't have friends who value her for who she is as an Autistic person?

    Did you ever think to ask those questions, Marjorie?

    Most times, most of those "behaviors" are our way of coping with a world not meant for people like us. It seems another lesson in empathy could be used here."

    My job as a parent, let alone as my daughter's advocate ( for now - till she is old enough - NOT till she is NT-passible enough!!! - to have a mature, well thought out position and to have it taken seriously by others ) is to teach her the necessary skills to allow her to live as an adult, be it with or without me. Because I am not immortal and there will be a time I will not be there...

    I have no doubt that the child in question might PREFER Pixie hollow for all of the reasons you mention. I would prefer it, too, to doing either math homework or laundry or cleaning a bathroom, or washing last night's dishes... But I am not doing my daughter a favor - nor would any parent be, be their child NT or on the Spectrum, if I allow her to believe that mere preference for something less stressful means she is automatically or always able to retreat from all non-preferred activities. I NEED to teach her how to cope with doing necessary but at times stressful things. She NEEDS this LIFE SKILL.

    If she chooses to play computer games instead of chat with a friend, OK. If she chooses to retreat there instead of showering when she needs to be clean, instead of learning how to do laundry so someday she doesn't run out of wearable undergarments, instead of practicing her math so she can make sure she is given correct change and not cheated... NOT OK, disability or no.

    It is my job as a parent to set reasonable limits so / until SHE learns to set them for herself. It is my job to instill in her the ability to self regulate enough that her preference doesn't get in the way of things like going to work ( assuming she is gainfully employed ) and / or getting fired and / or not being able to support herself in the event that I am not there to be her safety net ( because, I don't see - as much as I wish it were different - a time in her near future when she will not be judged by others as too "high functioning" to warrant either accommodations or government assistance no matter what her official diagnosis may read. )

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    1. Knowing Lydia, I don't think she means playing a game instead of handling one's responsibilities. My children love playing video games.. They'd do it all day if we let them.. But when they come home from school, they have to do their homework. When they are supposed to eat, they have to turn off the games. At some point, we'll add in the laundry and cleaning dishes skills (they're 6 and 7). That does not mean I don't allow them to play games when they have no responsibilities to take care of. But allowing them their decompress time means they are much more able to handle going out and meeting this non-Autistic world with all it's sounds and lights and confusion.

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    2. Anonymous, I'm puzzled by why you're reading Autistic Hoya's statements about Pixie Hollow as saying that parents should never make their kids do their homework. The comment to which she was objecting was "Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it."

      Every kid, with or without a disability, needs to be taught the importance of doing important tasks that aren't necessarily fun, like homework, cleaning, showering, etc. What Lydia's objecting to is the parent's attempt to micromanage the child's leisure activities like using facebook. This kind of controlling behavior essentially turns all of the child's time into "work time" and not "rest time," which is abusive. All children need some amount of meaningful leisure time.

      I don't see how Lydia's comment was remotely ambiguous on this point. From where comes this apparently widespread assumption that any Autistic person's objection to pointless "normalization" of Autistic children must automatically also extend to normal, non-disability-specific exercises of parental authority like making a child do homework or take a bath?

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    3. ... I should also note that Autistic Hoya is a student at one of the top universities in the country (a fact that's mentioned on her "About" page and incorporated into the very name of her blog), so I'd be pretty surprised if she doesn't understand the value of pushing kids to do things that are difficult but will ultimately improve their adult lives.

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    4. Parent, I am a home educating autistic parent of a child on the spectrum. I think that intervention in leisure hours, is far different from intervention when important things must be completed. All people need to learn that you also have to be able to do non-fun, things you'd prefer not to do.

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  19. I've been seeing very similar viewpoints in the past decade+ I've been involved in self-advocacy online. I rarely even try to contradict them anymore. It’s frustrating how many people know better than this, who do it anyway. Who choose to ignore information that has been right in front of them for years. That bothers me. Too many posters and commenters have been exposed to the right info to know better.

    I'm definitely one of those self-advocates who confounds the assumptions most people have. I type part of the time, cannot speak anymore (and when I did it wasn't that communicative) except for a bit of obvious echolalia, and often can't even type or form words in any other way. I often can’t understand concepts, immersed in swirled and scrambled sensory input. I need help with pretty much everything, and get services for most of the day and night. (At night I have a service that substitutes for a roommate, where I can hit a button and in five minutes someone will be here.) I live in a place that is not an institution, but does have only disabled and elderly people. I get RSDI, receive services from a developmental disability service agency, etc. My most recent IQ score is far from high (it drops over the years). I'm diagnosed with just straight "autism" -- no functioning labels attached. (When people have attached them, it's always been "low functioning" or "severe". I don't happen to believe such labels are accurate or useful on anyone, but it says something that I got labels like this even when I could talk superficially better than now.) I've spent a lot of time in both traditional and nontraditional institutions. The one time I tried living on my own, it was a disaster.

    I screw up people's ideas of what online self-advocates are like so much that people have over the years argued either that I am being exploited by parent advocates who write everything for me, or else that I'm some kind of fraud. (CNN checked into both possibilities heavily when I was being interviewed by them -- and they stated quite plainly on the air that I am in fact communicating and making videos entirely by myself, and that I am definitely autistic, as based on over a decade's worth of medical records, evaluations by multiple doctors over the years, various government agencies, getting developmental histories from my family members, childhood acquaintances, teachers, etc.) This shows what a threat some people think I am to their ideas about what people like us are like -- they've put a lot of energy into discrediting me in one way or another.

    One thing I wrote ages ago about the contrast between the false pictures some people spread, and our actual lives, is You Have It So Good. It also gives a lot of details about what my life was like the one time I tried to live on my own -- when I had more daily living skills than now.

    Also I noticed someone in comments here said that there are autistic people incapable of self-advocacy. My guess is this person has a very narrow idea of what self-advocacy means. I once wrote The Meaning of Self-Advocacy and would strongly urge anyone who thinks there are people incapable of self-advocacy, to read that article. Because as far as I'm concerned, the kind of self-advocacy that takes place on the Internet and within various organizations is only the tip of the iceberg.

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  20. As an autistic mother to an autistic child, I really appreciate this. Thank you so much.

    - Hanne

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  21. I'm a mother of a young son and I feel I will be a better mother because I read your blog. In my opinion you have won.

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  22. A very excellent and thoughtful rant. Thank you!

    As an Aspie, I've learned to mimic NT behavior as a survival skill, both for school (in the past) and work. I resent the fact that I often don't "look or act Autistic enough" is held against me. Yes, I can talk to people, I can make eye contact, but sometimes at such a price inside. Don't ever tell me I'm "not Autistic enough," because you don't have any idea what's going on inside me. And don't tell me I can't speak for myself and other Autistic people.

    Ictus75

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    1. I'm an aspie with pretty much the same experience. I can engage in a lot of behaviors that are considered NT, but a lot of the time it's exhausting, stressful or terrifying. There's a big difference between acting neurotypical in a situation where it's required/helpful and actually being neurotypical.

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  23. Thank you so much for this important post and all the others. I hope you never tire of writing this blog, you give me insight to so many different aspects of autism advocacy that I would never had thought of on my own, and I feel very lucky for that. I hope these insights will help in better mother to my dear autistic son, and a better wife to my autistic husband.

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  24. Terrific post. I'm a beginning scholar in disability history and a parent of a disabled child and I will definitely bookmark this post for reference when I come across a dismissal of "high-functioning" autistics or other disbabled. Keep writing, please, it is valuable.

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  25. Your point about parents considering the civil rights issue is right on. I see it with parents all the time. Is grabbing a child's hands to stop him from stimming a restraint? I feel that it is. Even though the intent may be loving it doesn't change the act. Is interrupting my son's echolalic recitation of a Phineas and Ferb episode annoying to him? Probably, and I try not to interrupt his perseveration unless I really need him to answer a question or do something important.

    While I agree that autistics speaking out will "add to the body of information the public uses to define autism," I disagree with Robison's conclusion after that statement. We need to increase that body of information. People need to understand, and without information there will be no understanding.

    I get tired too, but I always find a source of energy and renewal. I look into my son's eyes and think "he deserves a fair shot." I feel that in my heart and it resonates in my soul. (or cohesive electrical life force if you're not religious) That keeps me going. If you're tired then rest, but be ready to pick up the gauntlet again when you're rested. Thanks for taking the time to write such a detailed and informative post. Your passion is contagious.

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  26. I find your comments most pertinent, especially as a parent who faked neurotypicality for my first 52 years, and when finally properly diagnosed, was suddenly discounted by organizations like ARC which *claim* to support "self advocates." Trying to explain my uneven function to qualify for ANY services is ridiculous.

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  27. Very thorough, very thoughtful treatment of the topic. I'm glad you weren't too tired to write it. You're a fine advocate.

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  28. I have just found your excellent article and read it.

    I am, in some eyes, high functioning - an Aspie, and held a good jobs for 25 years. I wasn't diagnosed, had never even heard of it until I was 60yrs old.

    I am not diseased, I am not infected, or affected by vaccines or anything like that, I like who I am and I function well at what I can do.

    I AM though, disabled. Invisibly disabled. I had to give up work and can no longer work. Anxiety and inability to cope is a terrible disability that few accept.

    You are right it can be very hard for us.

    I can do and have done many things, including managing projects and teaching courses, yet now I rely on my wife to answer the telephone and to handle the post.

    I fully support and agree with what you write.

    You have my heart felt gratitude.

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  29. This is brilliantly written. Thank you so much for articulating these thoughts. I'm labeled "high functioning" and dismissed because of it all the time. I can't count the times when I have had the phrase "high functioning" thrown at me because I am able to write a blog and attend school. Yes, I live on my own and am pursuing a Master's degree, but that is in no way an indication of my overall ability to function in society at large. It says nothing about how well I am able to communicate with other people on a daily basis. It fails to even hint at the number of times I have returned to my apartment and completely melted down because a trip to the store was so absolutely draining that I barely made it back home without losing it. And then to be told that my voice doesn't matter and that I am unqualified to speak on behalf of myself and what it is like to be autistic? Frustrating and demoralizing don't even begin to describe it.

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  30. Thank You!

    It feels good to see someone speaking up about the diversity of Autism. I am high functioning Aspergers... It means alot to me that you said that the assumptions that just because someone is high-functioning that they don't need just as much help as those worse affected, are just that, assumptions.

    My own mother is guilty of that. She even says I can get rid of the label and become someone productive in society. Little does she really know about the constant struggle inside me.

    The fact that I am high functioning.. doesn't mean I don't need help. If they could see how hard it is on my husband when he has to prevent a complete meltdown when we shop or I get caught in the city in either peak hour or lunchtime. Then multiply that by alot, for how it feels to be me in those situations.

    And as to the discrimination part. I know how that feels. I want to be a productive person in society. I want to get a job in my area of specialisation. When I go for the entry level (as in no qualifications needed) positions, Its demoralising to see that they want a person with perfect/excellent People skils. Even for mail room jobs. I can't even claim to have those skills. And I'm scared that if I talk to centrelink about getting help and support to get a job... that I'll loose what little support I do get every fortnight.

    So thank you for saying the things I am too scared to. It means more than I can explain, (or even form into the right words for how i feel after reading this).

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  31. Thank you! I only read and heared the half of it but will read/hear the other half tomorrow. I like that you have written and spoken, because that way it is easier to focus.

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  32. Wow . . . . wow! Powerful stuff. Thank you for reading it and providing it in written form. I find my brain often processes thoughts better when I can read along as something is read to me so I found that very helpful! It inspires me to read some of my pieces out loud at some point.

    The rhetoric of "high functioning" is so pervasive and so attacking that (strange thought it may sound) it hadn't occurred to me until reading/hearing your piece that the fact that I have lived on SSI and medicaid for a great number of years is one piece of evidence that I'm not as "high functioning" as I am often accused of being.

    I have too often crumbled under the accusations that I have no business advocating for my fellow autistics because I am "too high functioning." I think about being very well-educated, very articulate (most of the time -- I'm one of those autistics who loses the ability to speak when sick or stressed. In fact, I'm preparing to buy the tools I need for AAC after a recent hospital visit found me unable to speak and too ill to fight for an ASL interpreter (thank you, unknown person in the emergency room who fought for my rights and got me what I needed! You are a saint.))

    You would think that someone who lives on governemnt disability benefits and sometimes loses speech would not be accused of being "too high functioning" to advocate for her fellow autistics. You would think that someone like me would not buckle under the pressure to believe that herself. But I am a doctoral candidate and come from a background of privilege and am too quick to bow my head and believe I don't belong in advocacy and activism.

    (continued)

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  33. (continued from above)

    That sense of not deserving to be listened to and not deserving to be assisted has led me to the point where I now find myself -- about to drop out of my program at ABD, after five years of graduate school, because I don't have sufficient supports, accommodations, or money to finish another couple of years for my comp exams and dissertation. I'm leaving school without that degree and I somehow think that makes me "high functioning?"

    Thank you for lighting a fire under me. I have no idea where my life is headed after this spring semester -- my last one. Without the student loan money I have lived on for so long, I have no idea what I will do -- SSI is not enough to cover all the bills and cost of living. With celiac, my food stamps barely cover a week of my more expensive food. And with hypernychthemeral syndrome -- a severely disabling circadian rhythm disorder rare in the general population but, as my research is beginning to reveal, much more common in the autistic population -- I am extremely limited in what sorts of jobs I wil be able to work ... if I can get a job ... and if I can keep that job. This is something I've never been able to do before, keep a job, so I'm not sure what might have changed now to make that more possible, especially with my degree going unfinished now.

    This is the sort of damage the people like Robison, Dachel, Olson, and the like unwittingly do with their articles -- in claiming that the words of other people have too much power, they forget that their own words have power as well and can serve to help squash a life already oppressed by struggles with disability, stigma, poverty, and more. It is already hard enough for someone like me to get the services and access I need to survive, let alone thrive. Convincing people like me that we don't even deserve those helps? That is just unconscionable.

    So . . . I'm not sure what I'm doing or where my life is heading from this point, but I am going to pick myself up, remind myself that "high functioning" is a poisonous "backhanded compliment" that only really means "shut up and go away" and continue to fight to find my way through the maze and seek the assistance I need to help me navigate. I may never get that assistance. But it won't be for shutting up and giving up, I assure you of that.

    You may be tired (I am tired, too) but you are also refreshing and energizing. You have charged my batteries and handed me a few extra spoons today. It may be a small thing, helping one person, but I thought you should know that you did, indeed, accomplish that goal with respect to this one person.

    Be well and keep pushing forward!

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