This post is some personal observations I have made about people’s perceptions of The Autism Spectrum. When I refer to “people”, I don’t mean “all people”, I just mean the people I’ve encountered personally, whether in real life or talking to online.
When people first learn about autism, it’s because their new friend [be it a real person or a fictional character] has been described as “having autism”. These people, not really understanding what autism is yet, look at their friend’s characteristics and decide that all the traits they have are autism - that’s what autism is, it’s being like Sherlock, Abed Nadir, Einstein, that quiet kid in class, your friend’s nonverbal son. The stereotypes can be nice (look at all the aspergers characters in film, books and television, which paint most of them as eccentric, bad with people, but nevertheless geniuses) or they can be bad (like “Autism moms” complaining how difficult it is for THEM to raise their child… or Louis Theroux’ documentaries painting a bleak portrait of autism “sufferers”).
At this stage, the person learning about autism usually seems to think of it as a binary state… like a lightswitch. They’ll tell you you either HAVE AUTISM and are therefore exactly like the stereotype they’ve created (lights on) or you DON’T HAVE AUTISM because you’re not exactly like that stereotype (lights off).
If they’ve read up a little more, they might have seen the word “spectrum”. Now they have a more generalized view of autism. But they get the idea of “spectrum” wrong - they see it as a linear thing: a number-line, a scale, a dimmer switch or volume control, from Zero to Autistic — or from “low-functioning” to “high-functioning”. At that point they say silly things like “You’re very high-functioning!” or “No, but I mean like, the really really autistic kids, who, like, can’t do anything because they can’t talk”. They invent this linear relationship between a person’s verboseness and “how autistic they are”.
A lot of people seem to get stuck at this point, so I think the word “spectrum” requires some explanation.
When I see the word “spectrum” I immediately imagine a rainbow, or light being split from a prism. I’m sure most people do. And sure, the spectrum of colours is derived from the electromagnetic spectrum - we get different colours at different wavelengths - it’s a continuous range.
BUT- where does white light come from? White light is a combination of all those different wavelengths. You can create new colours by mixing different colours together. You can make colours brighter by adding a little bit of the other colours. You can mix the wavelengths together at different intensities. There’s a lot of ways of combining colours.
Which essentially what the autism spectrum REALLY is. Which is why labels like “high functioning” and “severely autistic” are dumb labels. Just because one autie excels at public speaking doesn’t make them unanimously “high functioning”. Conversely, I know of nonverbal auties who are masters of writing. To tell someone with a vibrant imagination, intense emotions, passionate interests and brilliant intellect that they’re “low-functioning” because they don’t vocalize their thoughts out loud is a massive insult. To refuse someone’s pleas of help because they’re “too high functioning” is also a shitty thing to do (I’m looking at you, ATOS).
There’s lots of ways in which we function, some of which are interdependent, others independent, and the levels vary wildly between autistic people, and they also vary wildly in non-autistic people too:
- Long-term memory
- Short-term memory
- Physical awareness
- Spatial awareness
- Vocal ability
- Verbal reasoning / ability to understand instructions
- Linguistic skills
- Mathematical and logical skills
- Executive function / Planning
- Ability to filter information
- Processing speed of sensory input
- Ability to focus / attention span
- Emotional self-awareness
[These might not be the exact distinct cognitive ‘functions’ as according to all the sciencey literature, this was verbatim]
I see my functions as a bar chart. In the version I drew it’s a prism splitting white light into the whole spectrum, but the different colours fade out at different places (and it’s a homage to Pink Floyd :p). That bar chart can vary throughout the day, be markedly different on different days, and is always changing over time.
In times of anxiety all the functionality unanimously drains out of me. In a nice chilled out environment it all comes trickling back.
When I’m in the zone doing something I enjoy, some of those rays of colour will be shooting off the image :D
(Note how there’s no lines on the image denoting the “average person“‘s ability towards a particular function, because this shit is nigh on impossible to quantify person-to-person. All you can do is compare yourself to yourself)
I think that’s more accurate than “low functioning” vs “high functioning” ??????????
Facebook needs to engage in meaningful discussion about hate speech against people with disabilities. The scale of crimes against people with disabilities, as well as suicides by people with disabilities, is escalating and fostered by hate speech and photos posted on Facebook, which are currently categorized as merely “humorous” even when reported as hate speech by disability advocates. Facebook needs to review its Community Standards with disability advocates in a face-to-face meeting and publicize the results of the discussions. This is a matter of public policy in that Facebook’s direction on this issue can guide global policy on hate speech and disability. Facebook, be a global leader on hate speech against people with disabilities by learning that much of what is now simply perceived as “humor” involving people with disabilities needs to be reframed as hate speech.
Please signal boost.
Writing Resistance is a new writing and art project for multiply marginalized sick and disabled folks. We work to center the most marginalized people in our communities by building a space for creativity, mourning, affirmation and resistance through art, writing and performance. We celebrate bitterness, love, anger, healing, defiance and survival. For more information on Writing Resistance go here »
We are looking for writing and art (drawing, painting, photography) for the FIRST EVER Writing Resistance zine! We are only accepting submissions from sick, disabled and Deaf folks and people who are on the receiving end of ableism and/or audism. We are most interested in the submissions of people who are multiply marginalized in order to center the most marginalized folks in our community. All ages can apply.
Submissions are due Friday, March 15th.
- All final decisions on what will be published will be made by March 22nd, and folks will be contacted shortly after that. We do not intend to scrutinize the work of anyone who submits, but we may not be able to publish it all, and would like to stay in line with our mission of centering multiply marginalized folks and people who experience ableism and audism in ways that don’t often get talked about or shared.
- Submissions that need trigger/content warnings should be noted in this form.
- Works that are racist, classist, transmisogynist, sexist, femmephobic, queerphobic, cissexist or otherwise oppressive, will be dropped so fast. And, if any pieces are included in the final zine that are any of these things, we’ve fucked up, and will pull them.
- Please submit pieces that are relevant to YOUR OWN experiences.
- For writers, we encourage you to submit work of 2 pages or less, however we are not strict on this, but we may ask you to edit down your piece depending on the length of other folks pieces and volume of submissions.
- For artists, your art maybe resized to scale to fit into the zine, or we may ask you to submit a differently sized piece if selected. Please submit an image description with your piece that can be published in the zine. For tips on how to write an image description, read this.
We have until December 14 to get 25,000 signatures on it. You need to live in the USA, and you should seriously sign, signal boost, tumblr bomb, anything you can. Lives are on the line- lives of people like me.
Okay, I am judging you for the fact that this still needs 23,000 out of 25,000 signatures, Tumblr. What the fuck.
Um, do people not understand that this so so people with autism can get life-saving organ transplants, instead of given a death sentence on the grounds that our lives are inherently worthless?
Do you think this doesn’t happen to young adults?
Do you think this doesn’t happen to children with various developmental disorders?
Do you think this doesn’t happen to adults with Down’s Syndrome?
“Contraindicated.” That quite literally means that they considered saving a cognitively impaired person’s life HARMFUL.
!!! YOU DO NOT NEED TO LIVE IN THE USA TO SIGN THIS !!!
It ask for state/zip code but these are NOT mandatory fields!
^ Oh, didn’t know that! I was always like, crap, whitehouse, why can’t I sign?
MOVE IT, PEOPLE. I DON’T WANT TO BE NEXT.
Too often, casual observers mistakenly attribute laziness to people who have mental illnesses like depression or anxiety disorders that impair their ability to work and be active. A person with compulsive hoarding, for example, is not “lazy” about cleaning or organizing their home. For a person with compulsive hoarding, throwing away a paper cup may be dreadfully difficult and stressful. For such a person, throwing away five cups may require immense courage and hard work - it would certainly not be a task for the truly lazy.
We attribute laziness to people when they have failed to do specific tasks that we value. We typically do not label people lazy when we have stopped to consider the fuller range of their activity and motivations. If we value the person, we would more likely attribute the absence of productive behavior to the competing needs and motivations that they must have to do other things, e.g., to relax or to do something other than the task that we wanted them to do.
Often, the people that we label as lazy are folks who are on the margins of the working world, like homeless people or low-wage workers. Labeling people “lazy” is a way of deeming them as morally unacceptable (sloth is a deadly sin) and deserving of their low status. If we call someone lazy, we do it to dismiss them, not to understand them.
Public service announcement:
ALL MENTAL ILLNESS IS VALID
If you’re white: VALID
If you’re rich: VALID
If you’re a teenager or child: VALID
If you’re heterosexual: VALID
If you’re cisgender: VALID
If you’re able-bodied: VALID
Viewing health in the context of the intersectionality of oppression (i.e. as it interacts with racism, homophobia, transphobia, poverty etc) is hugely important, but that does not mean we get to write-off the struggles of anyone who is living with mental illness.
Seriously, I’ve been seeing a lot of posts like the below around lately and it’s really upsetting:
“i’m so depressed,” posted the caucasion heterosexual cisgender teenage girl on her blog
Ok good. Glad we cleared that one up.
The latest example of Wells Fargo thumbing its nose at the courts and using law enforcement to carry out its dirty work is the case of Niko Black, a 37-year-old Mescalero Apache woman, suffering from a rare and terminal form of cancer.
According to the Orange County Weekly, on the morning of October 10, Orange County deputies broke down Niko Black’s door despite a court order taped to it forbidding them to do so, put a gun in her face and crumpled up the court order. They then carried her out of the home in her wheel chair and left her on the sidewalk while they locked up her home. The deputies locked her medication and medical equipment in the house as well, denying her access to it.
“Because I have a very aggressive form of cancer, every appointment, every day is crucial,” she says. “I’m a person with a lower immune system. That’s why all my nursing care, my physical therapy, my medical equipment, everything is set up for home care. This violates the Americans with Disabilities Act.”
The eviction according to the OC Weekly and the law offices of Stephen R. Golden and Associates, was in violation of a court order.
Has this made the rounds yet? (I have deadlines so haven’t been able to check Tumblr much for the past few days). But in any case, have we forgotten
Tracy Traceee Traicey Tracie “I will ban a WoC just for misspelling my name” Egan Morrisey’s hipster and not so casual racism?
And now, of course, totally devoid of context, she takes it on Chris Brown’s mother. A woman who, by many accounts, was a victim of domestic violence herself. The irony of Jezebel running a very popular piece about hipster racism (which, unsurprisingly, had been appropriated from elsewhere) and now this piece about a WoC’s “mental health”.
ETA: And the comments are setting my head in flames: “She didn’t do her best to raise him, she failed as a mother” etc etc. Good grief, this is what passes for feminist discourse?!
This article is actually extremely condescending. You’re taking someone’s twitter feed and going over it in a hyper critical “lets laugh at how delusional and unelegant this clearly uneducated woman is.”
ITS TWITTER. I always have a problem when people take to criticizing HOW people say things & the language they use. Its like calling someone ignorant with a wink and a nod. They never say the word “unintelligent” but they might as well. That’s the whole joke.
Solitary confinement: Torture chambers for black revolutionaries
August 21, 2012
Russell “Maroon” Shoats has been kept in solitary confinement in the state of Pennsylvania for 30 years after being elected president of the prison-approved Lifers’ Association. He was initially convicted for his alleged role in an attack authorities claim was carried out by militant black activists on the Fairmont Park Police Station in Philadelphia that left a park sergeant dead.
Despite not having violated prison rules in more than two decades, state prison officials refuse to release him into the general prison population.
Russell’s family and supporters claim that the Pennsylvania Department of Corrections (PA DOC) has unlawfully altered the consequences of his criminal conviction, sentencing him to die in solitary confinement - a death imposed by decades of no-touch torture.
The severity of the conditions he is subjected to and the extraordinary length of time they have been imposed for has sparked an international campaign to release him from solitary confinement - a campaign that has quickly attracted the support of leading human rights legal organisations, such as the Centre for Constitutional Rights and the National Lawyers Guild.
Less than two months after the campaign was formally launched with events in New York City and London, Juan Mendez, the United Nations Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, agreed to make an official inquiry into Shoats’ 21 years of solitary confinement, sending a communication to the US State Department representative in Geneva, Switzerland.
What the liberals won’t tell you
While the state of Pennsylvania has remained unmoved in this matter so far, some in the US government are finally catching on. Decades after rights activists first began to refer to the practice of solitary confinement as “torture”, the Senate Judiciary subcommittee on the constitution, civil rights and human rights held a hearing on June 19 to “reassess” the fiscal, security and human costs of locking prisoners into tiny, windowless cells for 23 hours a day.
Needless to say, the hearing echoed in a whisper what human rights defenders have been shouting for nearly an entire generation: that sensory deprivation, lack of social contact, a near total absence of zeitgebers and restricted access to all intellectual and emotional stimuli are an evil and unproductive combination.
The hearing opened a spate of debate: with newspapers in Los Angeles, New York, Washington DC, Tennessee, Pittsburgh, Ohio and elsewhere seizing the occasion to denounce the practice as “torture” and call for a reversal of a 30-year trend that has shattered - at a minimum - tens of thousands of people’s lives inside the vast US prison archipelago.
But as happens with virtually all prison-related stories in the US mainstream media, the two most important words were left unprinted, unuttered: race and revolution.
Any discussion on solitary confinement begins and ends with a number: a prisoner is kept in his or her cell 23 or 24 hours per day, allowed three showers every week and served three meals a day. According to a report by UN torture rapporteur Mendez, prisoners should not be held in isolation for more than 15 days at a stretch. But in the US, it is typical for hundreds of thousands of prisoners to pass in and out of solitary confinement for 30 or 60 days at a time each year.
Human Rights Watch estimated that there were approximately 20,000 prisoners being held in Supermax prisons, which are entire facilities dedicated to solitary confinement or near-solitary. It is estimated that at least 80,000 men, women and even children are being held in solitary confinement on any given day in US jails and prisons.
Unknown thousands have spent years and, in some cases, decades in such isolation, including more than 500 prisoners held in California’s Pelican Bay state prison for ten years or more.
Perhaps the most notorious case of all is that of the Angola 3, three Black Panthers who have been held in solitary confinement in Louisiana for more than 100 years between the three of them. While Robert King was released after 29 years in solitary, his comrades - Albert Woodfox and Herman Wallace - recently began their 40th years in solitary confinement, despite an ongoing lawsuit challenging their isolation and a growing international movement for their freedom that has been supported by Amnesty International.
But all these numbers fail to mention what Robert Saleem Holbrook, who was sentenced to life without parole as a 16-year-old juvenile and has now spent the majority of his life behind bars, pointed out: “Given the control units’ track record in driving men crazy, it is not surprising that the majority of prisoners sent into it are either politically conscious prisoners, prison lawyers, or rebellious young prisoners. It is this class of prisoners that occupies the control units in prison systems across the United States.”
Holbrook’s observation is anything but surprising to those familiar with the routine violations of prisoners’ human rights within US jails and prisons. The prison discipline study, a mass national survey assessing formal and informal punitive practices in US prisons conducted in 1989, concluded that “solitary confinement, loss of privileges, physical beatings” and other forms of deprivation and harassment were “common disciplinary practices” that were “rendered routinely, capriciously and brutally” in maximum-security US prisons.
The study also noted receiving “hundreds of comments from prisoners” explaining that jailhouse lawyers who file grievances and lawsuits about abuse and poor conditions were the most frequently targeted. Black prisoners and the mentally ill were also targeted for especially harsh treatment. This “pattern of guard brutality” was “consistent with the vast and varied body of post-war literature, demonstrating that guard use of physical coercion is highly structured and deeply entrenched in the guard subculture”.
Reading stories about the prison-industrial complex always makes me think of the famous saying “America, land of the free.”
They’ve started a change.org petition. Maybe if we make enough noise we can fix this act of bullshittery?
Petition link here for easy reference: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant
Comparing national criminal-justice figures with those for an urban sample of mentally ill persons shows that they are more likely to be victims of violent crime than is the general population.
More than one-fourth of persons with severe mental illness are victims of violent crime in the course of a year, a rate 11 times higher than that of the general population, according to a study by researchers at Northwestern University.
They estimated that nearly 3 million severely mentally ill people are crime victims each year in the United States.
This is the first such study to include a large, random sample of community-living, mentally ill persons and to use the same measures of victimization used by the U.S. Bureau of Justice Statistics, said lead author Linda Teplin, Ph.D., Owen L. Coon Professor of Psychiatry and Behavioral Sciences at the Feinberg School of Medicine of Northwestern University, in the August Archives of General Psychiatry.
Victimization rates vary with the type of violent crime, said the researchers. People with mental illness were eight times more likely to be robbed, 15 times more likely to be assaulted, and 23 times more likely to be raped than was the general population. Theft of property from persons, rare in the general population at 0.2 percent, happens to 21 percent of mentally ill persons, or 140 times as often. Even theft of minor items from victims can increase their anxiety and worsen psychiatric symptoms, the researchers said.
“The direction of causality is the reverse of common belief: persons who are seriously mentally ill are far more likely to be the victims of violence than its initiators,” said Leon Eisenberg, M.D., professor emeritus of social medicine and health policy at Harvard Medical School, in an accompanying editorial. “The evidence produced by Linda Teplin et al. settles the matter beyond question.”
The Northwestern researchers randomly selected 16 sites from a list of 75 agencies in Chicago that offer outpatient, day, and residential treatment to people with mental illness. Participants were then randomly selected from these sites and stratified by sex, race/ethnicity, and age. To qualify for inclusion, patients had to have taken psychiatric medications for the previous two years or have been hospitalized for psychiatric reasons at some time in their lives.
In all, 936 patients with psychosis or major affective disorder completed the survey; 52 percent were male, and about 35 percent were African American, 29 percent Hispanic, and 34 percent non-Hispanic white.
Participants were interviewed using the Composite International Diagnostic Interview version 2.1, supplemented by diagnosis records. They also answered the National Crime Victimization Survey (NCVS), which is used by the Department of Justice to survey 43,000 U.S. households each year on crime victimization.
“The use of the NCVS makes a great deal of sense,” said Bruce Link, Ph.D., a professor of epidemiology at Columbia University, in an interview withPsychiatric News.
Future research on mentally ill populations should also make use of the NCVS questionnaire to provide findings comparable to national data, said Teplin. Investigators might ask about diagnosis, treatment, and socioeconomic issues, as well, she noted.
While 25 percent of their subjects in this study were victims of violent crime, 28 percent were victims of property crime, which is about four times higher than the national rate. Property crimes include household theft, motor vehicle theft, and property theft.
“These prevalence ratios are lower than the ratios for other crimes because property crimes are common in the general population,” wrote Teplin.
Incidence—the number of crimes per 1,000 persons per year—was also higher among people with serious mental illness.
For every 1,000 people in the overall NCVS survey, there were about 40 crimes. However, among those with mental illness, there were 168 such incidents.
“Prevalence and incidence were high among all racial/ethnic groups, probably because poverty—highly correlated with victimization—is common in our sample, irrespective of race/ethnicity,” wrote Teplin. Prevalence ratios were higher than incidence ratios, indicating that incidence was not driven by a few individuals being victimized repeatedly. The relative difference between the Chicago sample and the NCVS national survey may even be greater, since the latter would include a sample of the mentally ill population.
“Symptoms associated with SMI [serious mental illness], such as impaired reality testing, disorganized thought processes, impulsivity, and poor planning and problem solving, can compromise one’s ability to perceive risks and protect oneself,” she said.
Many severely mentally ill persons also contend with poor social relationships, substance abuse, homelessness, and poverty, which may also contribute to victimization.
“The results clearly say something about where people with mental illnesses end up in our society,” said Link. “Halfway houses and group homes tend to be located in areas without the political clout to keep them out.”
When most people associate crime and mental illness, they usually think of people with mental illness as perpetrators, not victims, said Link. Yet previous research shows that only discharged psychiatric patients who also abuse substances commit violent acts at rates greater than their neighbors.
“More studies like Teplin’s can help, but changing attitudes on the basis of data is difficult,” Eisenberg told Psychiatric News.“ It’s a tough problem and requires everyone’s engagement.”
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
Allow Autistic Student to Graduate!
Just a week before graduation, Sinclaire Coffer, an autistic student, found out he is not going to be allowed to graduate.
Coffer has good grades — mostly A’s and B’s — but he hasn’t been able to pass the math exam that is required for all Georgia students in order to graduate high school. The state allows students with disabilities to apply for a waiver that allows a student to graduate regardless of exams, but Coffer was denied. The family has not been told why, but most special needs students have been denied waivers.
Coffer wants to learn how to make movies and go to film school, but he cannot follow his dreams if he isn’t even allowed to receive his hard-earned diploma.
Please tell the Georgia State Board of Education to allow Coffer to graduate and to change the policy so that special needs students have better access to these waivers. This is an injustice and it needs to be changed!