Are medical professionals biased against the mentally ill?THE first time it was an ear, nose and throat doctor. I had an emergency visit for an ear infection, which was causing a level of pain I hadn’t experienced since giving birth. He looked at the list of drugs I was taking for my bipolar disorder and closed my chart.
“I don’t feel comfortable prescribing anything,” he said. “Not with everything else you’re on.” He said it was probably safe to take Tylenol and politely but firmly indicated it was time for me to go. The next day my eardrum ruptured and I was left with minor but permanent hearing loss.
Another time I was lying on the examining table when a gastroenterologist I was seeing for the first time looked at my list of drugs and shook her finger in my face. “You better get yourself together psychologically,” she said, “or your stomach is never going to get any better.”
If you met me, you’d never know I was mentally ill. In fact, I’ve gone through most of my adult life without anyone ever knowing — except when I’ve had to reveal it to a doctor. And that revelation changes everything. It wipes clean the rest of my résumé, my education, my accomplishments, reduces me to a diagnosis.
I was surprised when, after one of these run-ins, my psychopharmacologist said this sort of behavior was all too common. At least 14 studies have shown that patients with a serious mental illness receive worse medical care than “normal” people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions “a hidden human rights emergency.”
I never knew it until I started poking around, but this particular kind of discriminatory doctoring has a name. It’s called “diagnostic overshadowing.”
According to a review of studies done by the Institute of Psychiatry at King’s College, London, it happens a lot. As a result, people with a serious mental illness — including bipolar disorder, major depression, schizophrenia and schizoaffective disorder — end up with wrong diagnoses and are under-treated.
That is a problem, because if you are given one of these diagnoses you probably also suffer from one or more chronic physical conditions: though no one quite knows why, migraines, irritable bowel syndrome and mitral valve prolapse often go hand in hand with bipolar disorder.
Less mysterious is the weight gain associated with most of the drugs used to treat bipolar disorder and schizophrenia, which can easily snowball into diabetes, high blood pressure, high cholesterol and cardiovascular disease. The drugs can also sedate you into a state of zombiedom, which can make going to the gym — or even getting off your couch — virtually impossible.
It’s little wonder that many people with a serious mental illness don’t seek medical attention when they need it. As a result, many of us end up in emergency rooms — where doctors, confronted with an endless stream of drug addicts who come to their door looking for an easy fix — are often all too willing to equate mental illness with drug-seeking behavior and refuse to prescribe pain medication.
I should know: a few years ago I had a persistent migraine, and after weeks trying to get an appointment with any of the handful of headache specialists in New York City, I broke down and went to the E.R. My husband filled out paperwork and gave the nurse my list of drugs. The doctors finally agreed to give me something stronger than what my psychopharmacologist could prescribe for the pain and hooked me up to an IV.
I lay there for hours wearing sunglasses to block out the fluorescent light, waiting for the pain relievers to kick in. But the headache continued. “They gave you saline and electrolytes,” my psychopharmacologist said later. “Welcome to being bipolar.”
When I finally saw the specialist two weeks later (during which time my symptoms included numbness and muscle weakness), she accused me of being “a serious cocaine user” (I don’t touch the stuff) and of displaying symptoms of “la belle indifference,” a 19th-century term for a kind of hysteria in which the patient converts emotional symptoms into physical ones — i.e., it was all in my head.
Indeed, given my experience over the last two decades, I shouldn’t have been surprised by the statistics I found in the exhaustive report “Morbidity and Mortality in People with Serious Mental Illness,” a review of studies published in 2006 that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors. The take-away: people who suffer from a serious mental illness and use the public health care system die 25 years earlier than those without one.
True, suicide is a big factor, accounting for 30 to 40 percent of early deaths. But 60 percent die of preventable or treatable conditions. First on the list is, unsurprisingly, cardiovascular disease. Two studies showed that patients with both a mental illness and a cardiovascular condition received about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patients.
The report also contains a list of policy recommendations, including designating patients with serious mental illnesses as a high-priority population; coordinating and integrating mental and physical health care for such people; education for health care workers and patients; and a quality-improvement process that supports increased access to physical health care and ensures appropriate prevention, screening and treatment services.
Such changes, if implemented, might make a real difference. And after seven years of no change, signs of movement are popping up, particularly among academic programs aimed at increasing awareness of mental health issues. Several major medical schools now have programs in the medical humanities, an emerging field that draws on diverse disciplines including the visual arts, humanities, music and science to make medical students think differently about their patients. And Johns Hopkins offers a doctor of public health with a specialization in mental health.
Perhaps the most notable of these efforts — and so far the only one of its kind — is the narrative medicine program at Columbia University Medical Center, which starts with the premise that there is a disconnect between health care and patients and that health care workers need to start listening to what their patients are telling them, and not just looking at what’s written on their charts.
According to the program’s mission statement, “The effective practice of health care requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice.”
We can only hope that humanizing programs like this one become a requirement for all health care workers. Maybe then “first, do no harm” will apply to everyone, even the mentally ill.
By JULIANN GAREY
Published: August 10, 2013
Reblogging because this is the sort of thing that needs signal boosting the heck out of it. Probably many of the people who see this in my Tumblr are people who already know from first-hand experience as a patient. Probably most of the people who even know my Tumblr exists are not in a position to perpetuate this problem (because they aren’t doctors). But I figure if more people get info like this circulating, maybe eventually someone in a better position to reach more doctors with this kind of information and open serious dialogue about how to address the problem will come across this.
Until then, at least a better informed patient population can, I hope, be in a better position to advocate for themselves—if not always as individuals then perhaps as groups.
Tag: hate against the neurodiverse
“He has autism. I’m really surprised he was playing with you.”
This happens sometimes at work, and I’m never sure how to react. A parent (or other adult) will come up to me after I’ve been playing with their child, and point out that the child’s current behavior is really unusual for them.
Sometimes it’s young kids who just seem overwhelmed by their surroundings, and we’ll just sit together for a little bit. I’ll talk about things—their shoes, the weather, the character on their shirt—for little while, and then listen when they start talking. If they start talking—often, they don’t,and that’s okay.
Sometimes it’s a copycat game. They’ll hide from me, and I’ll hide from them. They peek out, and I peek out. They put their hands up, and I put my hands up. When they realize that everything I do is copying them, their actions get more intentional, silly, fun.
Last week there was a young man in our new Thomas the Tank Engine gallery. I talked with him for a minute, and it was immediately clear that he a.) loved trains, and b.) hated eye contact. So I stopped trying to make eye contact, and we played in parallel, not facing each other, but talking about trains, Thomas, the toys he had at home.
And it happened again, the grown-up coming up afterwards and confessing “He’s autistic, he doesn’t usually talk to people.”
And I smiled and said, “Well, it seems like he’s having fun,” because I didn’t know what else to say. And it did seem that way, and that’s great.
But I never know how to react when parents say that to me. They always seem pleased, grateful, even, and I guess they must mean it as a compliment. And if I made their day brighter, and (more importantly) their child’s day brighter, good. That’s wonderful, and it’s what I try to do with everyone who comes to the museum.
But it’s also weird, because—it’s what I do with everyone who comes to the museum. I’m not a therapist, I’m not a specialist, I’m not some mysterious Autism Whisperer. I just try to connect with kids and make their days better. I don’t have special tactics for “dealing with” autistic kids. I don’t even work in an environment where autistic kids are identified as such, except by their parents, after the fact.
So I’m literally treating these children as I would any other human: with cheer, and with kindness, with gentleness, silliness, understanding.
So when the adult says to me, “he never plays this way!” I worry.
Because I am not an extraordinary person. I am not doing anything special—just paying attention to the child, offering lighthearted interaction, responding to their needs and desires as best as I understand them. It’s how I approach every child I work with—hell, it’s how I try to approach every person I know.
So when I hear, “He never plays like this!”
I don’t really know what to say. But I hope with all my heart that its not because he’s never treated like this.
A Call for Solidarity with the Community of Ferguson, Missouri |
For the last few days, like many other disenfranchised communities across the country, the disability community has watched what is happening in Ferguson, Missouri. Our hearts are heavy with sorrow, anger, and fear for what is happening to individuals, families, and communities so similar to our own.
Even following the release of the name of the police officer who was ultimately responsible for Michael Brown’s death, we must still come to terms with the tragedy itself. This is a tragedy not just because of the precious loss of life or the actions of one person, but is also a tragedy that is caused by the criminalization and dehumanization of our own citizens. It is a tragedy not only for Michael Brown’s family but for the entire country.
Perhaps, it is more honest to for us to say, it is yet another tragedy that has become all too common for communities viewed as “other” to the American majority – young men of color, people with disabilities, lgbt individuals.
“They didn’t comply.” They were “bad kids.” “They were being belligerent.” “They looked suspicious.”
These statements that have no real discernable meaning often warrant a death sentence for the individuals upon which the observations are based.
- Eric Garner, 43, who had asthma, was pulled to the sidewalk onto his chest and restrained in a chokehold by an officer. The medical examiner cited that Garner’s cause of death was “compression of neck (choke hold), compression of chest and prone positioning during physical restraint by police.” (New York)
- Robert Ethan Saylor, 26, who had Down syndrome, went to see a movie and refused to leave. It was customary for Saylor to see a movie twice. Deputies put Saylor on the floor, held him down, and handcuffed him with such force that he suffered a fracture in his throat cartilage and died of asphyxiation. (Maryland)
- Keith Vidal, 18, who had schizophrenia, was tasered, then shot, and killed when his family called law enforcement for help calming their son down. Vidal’s stepfather said, “”They killed my son in cold blood. We called for help, and they killed my son.” (North Carolina)
- Gilberto Powell, 22, who has Down Syndrome, was beaten by police outside his home and was left with horrible bruises and scars on his face when law enforcement suspected he was carrying a weapon and tried to pat Powell down. Powell did not understand and ran. The suspicious bulge in his pants? It was a colostomy bag. (Florida)
- Barry Montgomery, 29, who has schizophrenia, Tourette’s syndrome, and is non-verbal ,was harassed and then beaten and tasered for 25 minutes by sheriff officers when he was confronted about the smell of marijuana in his general area, and Montgomery did not respond. Montgomery sustained massive permanent injuries. (California)
Eric Garner, Ethan Saylor, Keith Vidal, Gilberto Powell, and Barry Montgomery – these are the names of a few people with disabilities who were brutally injured and killed because of who they are. There are many who were lost before them, and there are certainly others whose names we will never know because the brutality against them was never reported.
When a system that is designed to protect and serve is fueled by fear and anger, that is not merely a surmountable problem. It is a catastrophic failure of the system, and it demands transformation. Such a failure represents a lack of leadership, a corruption of institutions, and a distressing willingness to purposely and violently silence the voices of entire communities marked as different, non-compliant, and suspicious.
Perhaps what is most disconcerting however, is that the failure to support our young men of color, who are gay who have disabilities, who are poor, is not just to be laid at the feet of an intolerant police force, self-interested politicos or even a sensational hungry media. The fault lies in our own hearts.We have not taken enough of the responsibility to manage and maintain the values that we believe are right. We have been complacent in our engagement and been comfortable enough to declare that the problems are with other people. We have allowed ourselves to be separated into tiny groups of associated individuals rather than communities participating in a collective conversation about the state, direction and makeup of our society.
We have allowed problems of marginalization, exclusion, inaccessibility, dissemination, sexism and bigotry — problems that affect us all — to instead be addressed by a few, and have been content to say that it is a disability problem, or a race problem or gender problem or sexuality problem rather than admit that it is a problem for all of us. As members of a community that supports justice and inclusion we do not have the luxury to stand by when injustice is blatantly taking place in any form, and nor should we be satisfied to wait for other communities to ask for our help.
Civil rights, respect, and justice are due to all. We will not remain silent. The disability community, like the LGBT community, and so many others around the country, stands with the family of Michael Brown and with the people of Ferguson, Missouri. We call on the national and local media to be responsible and steadfast in their coverage of this story and others like it. We call on policy makers on all levels of American government not to shrink from action, and we are deeply grateful to Attorney General Eric Holder and the Department of Justice for their immediate commitment to a thorough investigation. Let us all come together, not only to rally and mourn but also to plan for action and collaboration.
Lastly, we specifically invoke the words of Justin Dart in “a call for solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all.”
The Lead On Network
Autistic Self Advocacy Network
Ollibean
Washington Metro Disabled Students Collective
Queerability
Ramp Your Voice!
Helping Educate to Advance the Rights of the Deaf (HEARD)
If you are a disability organization and interested in signing on to this statement, please contact us at LeadOnUpdate@gmail.com. If you are an individual with a disability who cares about this issue and supports this statement please share it widely. Also, we know you have your own thoughts to express and urge you to do so in the comments. We will not remain silent! The events of the last week touch us all.
We are honored to join leadonupdate, queerability, and others in signing on to this letter of solidarity with the Community of Ferguson, MO. Not only do we face related struggles, but there are undoubtedly Autistics in Ferguson, and definitely Autistics of Color who face the issues being struggled with and protested against in Ferguson across the nation and the world.
If you are a disability org, please join us in signing on to this letter. Instructions are at the end of the text.
Film Review of documentary “Sounding the Alarm: Battling the Autism Epidemic”
Recently, I decided to watch the new Autism Speaks documentary “Sounding the Alarm: Battling the Autism Epidemic” and live tweet my reaction/outrage in real time.
Why did I do this?
Well, I had seen clips of the documentary. I’d heard some feedback that was concerning. I know that many of my friends wanted to watch but were afraid to. I think it is quite telling when a group called Autism Speaks puts out a documentary that Autistic people are afraid to watch. I wanted to watch it because I wanted to know what was being said about us, without us. Again.
Film Review of documentary “Sounding the Alarm: Battling the Autism Epidemic”
Open letter to “theory of mind deficit” proponents
Either autistic people have a theory of mind, or theory of mind isn’t a fundamental part of being human. It can’t be a fundamental part of being human if some humans don’t have it.
I’m as human as you are. That isn’t questionable.
Yours sincerely, an autistic person
ufod:
heres an idea: instead of trying to “fix” autism try to fix the way allistic people react to austic people because saying you want to cure autism and trying to find a way to make sure autistic children arent born is just like saying that you want to cure gay people and thats :///////
They actually did that.
As in, there were studies.
They found that when they tried to improve the social skills of the autistic kids, nothing much happened.
When they improved the social skills of the nonautistic kids (by telling them how to properly interact with autistic people without freaking us out and overloading us), then the autistic kids’ social skills suddenly improved.
Why? Because we were reacting to being treated with respect for the first time ever, by other kids. Because other kids were making room for our sensory sensitivities and our social differences. Because they were making an accessible environment for us, and in an accessible environment, suddenly we thrived socially.
And that says everything about where the social skills problems actually lie.
How about making things that autistic people need more accessible and not cost WAY more money than most people can afford? If people are nonverbal much of the time but, say, have a much easier time typing, how about we just ACCOMMODATE THAT with electronic thingies that talk or whatever works best for that person?
My brother is 15 and autistic. He also has some cognitive impairments. Sam is … I don’t know a good way to say “more autistic than me” (which sounds awful) without resorting to a Functioning label, unfortunately, and I don’t want to do that. (I’m afraid I avoid looking up autism stuff like the plague because it makes me want to set the cure and anti-vaxxer types on fire and I don’t need that added stress.) *considers* Sam consistently has more difficulties than I do, though we’re both on the Autism Spectrum. How’s that? (Seriously, if you can help with terminology, I’d appreciate it. iamshadow21, do you have anything for me that doesn’t sound terrible?)
You know what would be really great for Sam? A service dog. Even though we’ve been working on the “Sam, you have to look both ways before you cross the street. Stop look and listen!” thing for years, Sam just can’t get it down. That’s a serious safety hazard! And I think it’d help him feel less isolated, too. AND it’d help his anxiety and stress levels in loud, crowded public places when he starts to feel overwhelmed. But there’s no way we can pay thousands of dollars for that. AND a lot of service dog programs are focused around little kids with nothing for teens or adults.
Most of the autism programs – at least in our area – stop around age 10. MAYBE a couple go to age 12. But … apparently autistic kids aren’t going to grow up to be autistic teens and autistic young adults? There is quite literally NOTHING for a kid Sam’s age. There isn’t in most places. And I’m not talking about a cure thing, but being able to socialize with other people his age who GET IT.
Sam knows he’s different. He’s a pretty happy kid, but he does know that. He’s lumped into a general special ed class for his first and last hour at school and mainstreamed for the rest with an aide and I HATE IT. I hate it SO MUCH. Half the time they just dick around and show the kids movies. That is not educational in any way whatsoever – it’s not like they talk about the content in any way. They don’t even seem to have anyone trained properly in Special Ed – based on my observations at any rate.
You know what Sam needs to learn that ISN’T stupid movies? Real life skills like practice with money and how much money is worth. (We work on that at home with his allowance for chores, but we can’t do it completely alone.) Telling time – though he’s actually not bad at that and I try to work with him, but I’m not a trained teacher and I can’t quite figure out which part is tripping him up. IN THEORY his actual teachers should be able to help with that.
I threw a hardcore temper tantrum – tears streaming down my cheeks and repeating sentences over and over and rocking A LOT, and screaming over my mom using the telephone – when I found out that in high school they were putting him in the “Vocational Training” class. That’s a polite way of saying “They have the Special Education kids empty the trash and the recycling bins and sometimes work in the cafeteria serving school lunch so they don’t have to pay somebody to do it.” And if Sam is doing that, he should damn well be getting paid. I went to that high school (before I dropped out). I saw the way the other assholes at high school treated those kids!
The ONLY reason that I’m putting up with it at all is that my mom has been sick/injured enough to require a lot more of my attention and doesn’t have the energy to deal with it and *I* can only handle so much – especially since I’m Sam’s sister and not his legal guardian. And Sam likes it, but he’s being taken advantage of horribly and it infuriates me. I want to rip their faces off with my teeth.
Goddamned fucking circle people.*
*Again to quote House: See, skinny, socially-privileged white people get to draw this neat little circle. And everyone inside the circle is “normal”. Anyone outside the circle needs to be beaten, broken and reset so that they can be brought into the circle. Failing that, they should be institutionalized. Or worse – Pitied
If he can tell you, I’d ask him how he categorises his autistic experience and respect that, but basically, disability is not a dirty word. If particular aspects of his autism are disabling, if they affect his life in ways that need accommodation or support, then disability or difficulty are the right words to use. You are both autistic, but your patterns of dis/ability will be different from each other, as they would with any two autistic people, especially if either of you has other diagnoses to factor in. Sam may struggle with things you can manage, and vice versa. Many autistic people object to functioning labels because they imply a line, with ‘severe’ at one end and ‘neurotypical’ at the other and all the bullshit assumptions that go along with that flawed viewpoint, when really, neurodiversity is like a colour wheel scattered with buckshot. Everyone’s skills and difficulties form a different constellation.
Your Children Are Listening
You might think they’re too young to understand. You might think they aren’t paying attention. You might even think they are incapable of awareness. You are wrong; your children are listening. Your…_____________________________
We are hearing and feeling and seeing, even when you don’t think we can.
The problem with errorless learning
Content warning: This is a somewhat graphic post about ABA that links an even more graphic post.
There’s a particular variant on ABA called “errorless learning”, which works like this:
- You break a task down into small steps
- Then do discrete trials of the steps, over and over (If you want to know more about what discrete trials are, this post by a former ABA therapist explains it).
- When someone does it right, you reinforce in some way (either by praise or something concrete)
- When they do it wrong, you either ignore it, or prompt and reinforce a correct response
This is considered by many to be a kinder, gentler form of ABA than punishing incorrect responses. (And maybe in some sense it isn’t as bad as hitting someone, taking their food away, or shocking them. But that’s not the same as actually being respectful. Respecting someone takes much more than refraining from hitting them.)
Errorless learning is not actually a good or kind way to teach someone. It is profoundly disrespectful.
When you ignore responses that deviate from prompts, that means that you’re ignoring a human being whenever they did something unexpected or different from what you wanted them to do. It means you’re treating their unscripted responses as meaningless, and unworthy of any acknowledgment.
That’s not a good thing to do, even with actual errors. When people make mistakes, they’re still people, and they still need to be acknowledged as thinking people who are making choices and doing things.
Further – not every response that deviates from the response you’re trying to prompt is actually an incorrect response. There are a lot of reasons that someone might choose to do something else. Not all of them are a failure to understand; not all of them are incorrect in any meaningful sense.
For instance: they might be trying to communicate something meaningful:
- They might be putting the story pictures in a different order than you’re prompting, because they have made up a different story than the one you’re thinking of
- They might be giving you the boat instead of the apple when you say “give apple” because they are making a joke about the boat’s name being Apple
They might be intentionally defying you in a way that deserves respect:
- They may be of the opinion that they have better things to do than put the blue block in the blue box for the zillionth time
- They might know perfectly well what you mean by “give apple”, but think that eating it is a better idea
- They might be refusing to make eye contact because it hurts
They might be thinking of the task in a different way than you are:
- They might choosing to use a different hand position than the one you’re prompting, even if they understand what you want them to do
- For instance, they might have discovered that something else works better for them as a way of tying their shoes
- Or they might want to try different things
- Or the position you’re using might hurt
People do things for reasons, and those reasons aren’t reducible to antecedents and consequences. People have an inner life, and their thoughts matter. Even children. Even nonverbal children who need a lot of help doing things. Even adults with severe cognitive impairments. Even people who have no apparent language. All people think about things and make decisions, and those decisions are meaningful. All people deserve to have their thoughts and decisions acknowledged – including their mistakes.
When you teach someone something, acknowledge all their responses as meaningful, whether or not they are what you expected.
cultural problem
I think a lot of the autistic and autism communities have this idea that… there’s a type of person called aspie. And those people aren’t ~real autistics~, they just are really good at academic geekery and bad at knowing that people are real.
But there’s this notion that *that* kind of autistic person isn’t really disabled, especially if they can pass.
And there’s a real cognitive subtype that actually *is* associated with receptive language problems, being good at academics and other abstracty things, and being able to pass if you push yourself in certain ways. But those people are disabled too.
And I think – those of us who have been pushed to see ourselves as that subtype when we’re not, when we’d never in a million years be capable of that, often end up being somewhat repulsed by people who *do* have that particular cognitive configuration.
And it’s not ok. Because the ableism we face isn’t their fault, and they’re no more free of it than we are. And we need to not be part of the problem.
The aspie hate things people say are not accurate descriptions of *anyone’s* cognitive type.
This is true and valid and I agree we need to stop eating our own.
Though I want to say something about the aspie subtype. As someone who benefited from that label (and no long IDs as an aspie), I’ve always felt that non-autistics and neurotypicals tend to value one subtype over the other. They usually are the once that sort of enforce this schism. Aspies are portrayed as goofy, cute, white boys who just want to fit in. People see they stereotype of them being good with math and computers as marketable. They seek out IT type aspies. Whilst everyone else gets passed over. The problem is many of them that are articulate, passing and have enough social reading, they end up buying this well constructed lie that they are far more valuable than non-speaking, chronically ill or non passing autists. So they end up throwing us under the bus.
This is not a new phenomena. Nevertheless it’s still fugging awful. My problem is not aspies but the NTs and the allistics that enforce and build this massive schism up. They want us in-fight, they want the aspies to talk over us over issues, they want the resentment. This hierarchy is artificial and awful and we need to destroy it.
So yes, they are disabled, but they also benefit a great many privileges too they need to realize themselves that we’re all drowning.
I have no problem personally with the term ‘Aspie’ or people who identify as such, but I stopped using it to identify myself because I realised that it came with baggage. Functioning label baggage. ‘Asperger’, for people who even know the term, tends to be equated with ‘high achiever’. It tends to imply that the person will go far if they find the right career, will succeed in academia if they find the right specialty. It implies a level of competence that I consistently failed to be able to live up to.
Now, my diagnosis was for Asperger Syndrome plus a handful of other things, and don’t get me wrong, I don’t think any diagnostician would diagnose me differently. I am highly verbal, highly literate, and as a child I learnt to pass to a degree and I live with that privilege/curse every day. But I failed out of my last year of high school and four further education attempts because the social stresses and expectations pushed my anxiety through the roof and into burnout so severe I was housebound. I had a handful of minimum wage jobs, one I know I was fired from because of my (then un-dxed) autism, and two that I probably stopped getting shifts from because of my short-term memory issues and my failure to grasp things at times that seemed easy or common sense to those around me.
‘Aspie’, with its connotations of competence behind a quirky, eccentric shell, made those around me – family, social workers, employment case managers – think that I just wasn’t trying hard enough. And that was crushing.
I realised when I started reading about other autistic people, that I always seemed to find more in common with ‘autistic’ rather than ‘Aspie’ autobiographers. Even if our actual life experiences were very different, ‘autistic’ authors seemed to write more about problems I faced, and seemed to more often have a world view closer to my own.
‘Aspie’ began to seem very limited, while ‘autistic’ encompassed the whole of my identity and disability. It had the flexibility I needed to cover my experience.
Add to that, I have a running tally for how many people I once loved and respected who have made the ‘arse burgers’ joke to my face when I disclosed. The first time was a very old and dear friend at my birthday dinner, a handful of months after my diagnosis. At the time, only a few people close to me knew. Every time someone makes that joke it catches me unguarded, and every time it hurts. I will never understand why people think that making that joke when someone is in such an incredibly vulnerable place is acceptable. Every time, it’s as if they think they’re the first person to think of it, and that they’re hilarious. At least the word ‘autistic’ gives me one less vulnerable place than if I use the word ‘Asperger’.
knitting in the dark 