Tag Archives: asperger syndrome
Hi, I’m Cydne. I’m a pansexual, biofemale whose gender identity changes from day to day. I have severe mental health problems, and Aspergers too, as well as arthritis and IBS. Joy! I’m a massive Trekkie and a video game nerd, and I usually blog at livebythem.tumblr.com.
There was a day last year I remember quite clearly. I went shopping. I spent 20 minutes talking to one of those guys who proposition people on the street for charity donations. He was collecting for a charity I do not agree with, and he was asking for a donation I could not afford. I ended up donating anyway. About an hour beforehand, I bought some overpriced cheese because the aggressive free samples guy made me feel guilty by handing me the product right after I took a sample. I’d also gone large that day on my McDonald’s order, because I forgot to ask for a medium, and the server said “So that’s a large, yeah?” and I was too embarrassed to say no.
Anyone with conditions like mine will have similar stories to tell. Those of us with social phobia who are afraid of confrontation. Those of us on the Autistic Spectrum who are easily led and manipulated. Those of us with depression who are lonely and just thankful for someone to talk to. We are the ones who are most easily tricked by aggressive sales techniques, most likely to tip high when a server pretends to be our friend, most likely to keep something we don’t want for fear of confrontation upon returning it. Yet, statistically, those of us with mental illnesses are more likely to be jobless, and thus, more likely to be unable to afford the things we buy out of fear and guilt. According to a UK study, only 20% of people with mental illnesses are employed.
It is likely that the companies who instruct and train their employees to act in this manner are aware of the effect they have on us. A friend of mine took a seminar in “Assertiveness and Sales Techniques.” He was taught how to spot weaknesses and take advantage of them in order to sell products. He was taught to be slightly flirty with women who seem to care a lot about their appearance, and taught to act like a kind friend to people who shop alone — especially women who look nervous or unhappy. In short, he was taught to spot psychological weak points and use those to sell goods.
I doubt his experience is a rare one. These multinational corporations pay millions of dollars to research firms to help them improve sales. Sales research groups use psychologists to help them better understand how to sell to people, especially on the case of body language. The effect Autism and mental health issues have on body language is well known. So there’s a fair chance that they know they are harming those of us with mental health problems and Autism or Aspergers, for the sake of sales, both emotionally and financially, similar to how they know they are harming those with body dysmorphic disorder by advertising using only photos of the slim and airbrushed.
It’s the donation soliciting people that affect me the most, I think. They seem to deliberately target me, perhaps because I used to shop alone. I find confrontation terrifying. I find meeting new people terrifying. And I’m terrified of what people think of me. So, when a friendly looking guy approaches me and asks me for “a moment of my time to discuss Oxfam,” I find myself unable to walk away, lest he judge me, or say something to me to make me feel bad in some manner.
They always say things like “it’s only £3 a week, anyone can afford that!,” and I find myself so ashamed of being on benefits and having shopping bags with me, that I have to agree and sign up. Even now, I feel like I should tell you that my bags usually contain pet food or replacement clothing, in case you judge me for how I spend my benefits. Heck, let’s be honest, saying “everyone can afford £3 a week” is pretty darned classist, too.
A day spent shopping may not seem all that memorable to most people. But my day shopping last year will likely stay with me forever, serving as a reminder of my vulnerability. I no longer shop alone. I do my shopping online, or with a trusted companion. I am a vulnerable person, through no fault of my own. This is not about being easily persuaded, or being a stereotypical “shopaholic” female with no money management skills. This is about being ill, and knowing that most companies out there will gladly take advantage of that.
Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.
Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.
Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.
This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.
Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.
EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.
Your friendly neighbourhood Anna is out of town at the moment. Please enjoy this recommended reading post from the future.
Lindsay at Autist’s Corner: Doubly Deviant: On Being Queer and Autistic
EXECUTIVE SUMMARY: This is a very long, rambly autobiographical post about being bisexual and being autistic: it compares my experiences coming to terms with both of these facts (always knowing about the autism, vs. having to figure out the sexual orientation; and also, doubting the possibility that I could *have* a sexual orientation because I thought autistic people didn’t date or have sex, or even want to do either of those things) with those of Amanda Forest Vivian, who is a lesbian, and autistic, and has written about those things at some length at her own blog. I also discuss the ways being autistic has complicated being gay for me — besides my initial difficulty realizing that what I felt about girls was, in fact, sexual desire, there was also a profound isolation from the larger Gay Community, which I never felt like I could (or would want to) join.
Have we linked to High Functioning yet?
A list of different ways people use the word “high-functioning” about people with developmental disabilities; an attempt to figure out what it actually is supposed to mean.
Interested humans–people with disabilities, staff, family members, allies, and people who are more than one of those things–are invited to share different ways they have heard the term “high-functioning” be used.
Amanda Forest Vivian at I’m Somewhere Else: 12. Bird Brains
The classic example of impaired “social skills” in people with “Asperger’s” is a person who constantly talks about their favorite subject, and doesn’t notice other people’s boredom or discomfort. I will explore this by presenting two people who like to talk differently.
Shiva at Biodiverse Resistance: Call for Papers – * Critical Autism Seminar Day * Tuesday, 18th January 2011 (UK)
Keynote speaker: Anne McGuire* (Department of Sociology and Equity Studies in Education, Ontario Institute for Studies in Education (OISE), University of Toronto, Canada). Anne’s doctoral research analyses the social significance and productive effects of cultural representations of autism produced and circulated by individuals and collectives engaged in autism advocacy in the contemporary West.
Our aim is for this conference to be as inclusive as possible. We welcome activists, undergraduate and postgraduate students, practitioners and academics to join us.
Melissa Mitchell at Service Dogs: A Way of Life: Book Review: MAKING THE MOVE TO MANAGING YOUR OWN PERSONAL ASSISTANCE SERVICES (PAS): A Toolkit for Youth With Disabilities Transitioning to Adulthood
(includes PDF link to download of book)
This in-depth 69 page guide covers this ins and outs of personal assistants for youth with disabilities utilizing the stories of youth with disabilities to illustrate topics related to utilizing, hiring, and selecting personal assistants. Pages 10-12 talk about Service Dogs and an option for meeting personal care and assistant needs. The section is clear, honest and bringsup many good points people who are new to dogs often don’t realize.
US: National Federation of the Blind: Penn State Discriminates Against Blind Students and Faculty
Baltimore, Maryland (November 12, 2010): The National Federation of the Blind (NFB), the nation’s oldest and largest organization of blind people, announced today that it has filed a complaint with the United States Department of Education, Office for Civil Rights, requesting an investigation of Pennsylvania State University (Penn State) for violating the civil rights of blind students and faculty. The NFB filed the complaint because a variety of computer- and technology-based services and Web sites at Penn State are inaccessible to blind students and faculty. Title II of the Americans with Disabilities Act requires public state universities to offer equal access to their programs and services.
This is being discussed as well at the Chronicle of Higher Education: Penn State Accused of Discriminating Against Blind Students. Please be aware that the comments are… Well, they’re internet comments in a place that isn’t exactly disability-friendly, although there are many people pointing out that blind students would like to be able to get classroom material as well.
Anyway, I have just realised that I am actually writing this from the past – I always get confused when I travel if I’ve gone forward or backward in time.
Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.
Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?
As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.
there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.
After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas. You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).
Finally, this week — September 13-19th — is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.
Neli, as his family calls him, is 18 and has Asperger’s, a mild form of autism. Three Mondays ago, he rose early and left home without telling his mother. “When I entered his room at 6:30 am and didn’t see him, I assumed he had gone for another walk,” she says. It was a school day.
Four hours later Stafford County authorities had ordered a lock down for eight schools, and Neli was in police custody, facing one count of malicious wounding of a law enforcement officer, one count of assault and battery of a law enforcement officer, and one count of knowingly disarming a police officer in performance of his official duties. The cascade of missteps that led to the arrest suggest a combination of public racial profiling and the over reaction of law enforcement officers who are unfamiliar with autistic behavior.
If I believed that the people doing h/c bingo were bound to write horribly problematic stuff, I would not be writing this post. Because it’s a lot of effort and not really all that pleasant and I don’t like talking at brick walls and in that case I could just wait until you wrote the horribly problematic stuff to take it apart. The reason I am writing this post is because I think it might change things. And I think the same goes for a lot of people in this discussion.
The vast, vast majority of the eighty-three (so far) comments on this post concern women’s bodies, full stop. The list went on: people (women) are in denial about their size; thus they wear ill-fitting clothes which are somehow a grievance committed against us, the viewer; people are gross for being fat but they’re really gross for not disguising this fat in some way according to the standards of the poor innocent bystander who has to see this body.
Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.
This is a transcript of Sharon daVanport’s interview with Melissa Barton for the Asperger Women’s Association. Melissa’s son Alex was voted out of his kindergarten class Survivor-style by his teacher, Wendy Portillo, in May 2008; Alex has Asperger Syndrome. The Bartons have recently filed a federal lawsuit.
Let’s start with, this was her way of “fixing” Alex. And when I addressed the fact that, no, we were in the process of developing an IEP for services, we had a Student Assessment Team, and we all knew that he very likely had autism and more specifically Asperger Syndrome. This was real well-known and I addressed this with her, and she said to me that this was her form of psychology, and this was how she was going to magically heal my child.
A major downside to being flatbound ’cause of crippling anxiety and dealing with epic depression was no energy to exercise, and not being able to go outside to do so anyway.
Now I’m on anxiety meds and antidepressants. I still don’t have the energy to exercise, and I’m still flatbound, because the anxiety meds make so SO. INCREDIBLY. TIRED. I just made a sandwich for lunch, because I’m starving (that’s a plus to the antidepressants–I’m able to notice when I’m hungry again) and I’m wiped out. Just from making a peanut butter and apple butter sandwich, I’m exhausted.
I found out from my acupuncturist that the state of Michigan is considering requiring it’s citizens to get a doctor’s referral to go to an acupuncturists. So, in other words, rather than hearing from a friend that she went to acupuncture and that person deciding to give it a try too–Michigan wants to make it so that you have to go to a doctor first, and then, if the doctor is willing to actually give you the referral, you can go to the acupuncturist.
Many people who know about the history of midwives in the U.S. know why this is such an extraordinarily bad idea. But for those who don’t know that history–what this particular requirement would do is first and foremost, place an incredibly unfair burden on those people who don’t have health insurance. Those who are unable to afford a doctor would simply have yet another health alternative option removed from their already limited health arsenal.
My school district needs to cut $1.5 million from the budget this year. $900,000 of that comes from “an accounting error”. Think about that.
Wouldn’t you think that *somebody* might have been suspicious of a miraculous decrease in special ed costs, given that special ed is both expensive and needed by more and more students?
In the news:
Their apparent ability to tune in to the needs of psychiatric patients, turning on lights for trauma victims afraid of the dark, reminding their owners to take medication and interrupting behaviors like suicide attempts and self-mutilation, for example, has lately attracted the attention of researchers.
In September, the Army announced that it would spend $300,000 to study the impact of pairing psychiatric service dogs like Jet with soldiers returning from Iraq and Afghanistan with post-traumatic stress disorder. Both the House and Senate have recently passed bills that would finance the training and placement of these dogs with veterans.
If you are born differently abled, the state of your body is absolutely normal to you but if you come to this identity after being fully abled, it is a loss. I think that it is important to acknowledge this for exactly what it is. I have had doctors tell me that this is not healthy or normal. I have been encouraged to medicate myself into a false state of happiness. Being sad makes people uncomfortable and to own this sadness as completely as I do, even more so.
The woman that I was four years ago is gone forever. The woman that I thought that I would become ten years from now will never appear. This is a loss and it is traumatic. I have only lost one person in this life who was close to me and dealing with this disabled identity is very much the same sort of feeling. It is natural to mourn and this does not mean that you do not accept or love your new identity; it means that the person you were before was also of value.
Do not start with ‘but she’s not mad, she’s autistic’. This is not the moment for comparing isms and/or deciding that neurological disabilities deserve more or less stigma than psychiatric ones. For the moment, please, let’s lump them all in the same category, under ‘things causing one to be locked in a loony bin so that no one has to see us’.
This episode disrespects people like Amanda. Do not argue that it’s different because this is a special *space* madness that doesn’t follow the normal rules of psychiatry or neurology. It’s not, it’s playing on the same tropes human beings have been playing with since madness was *invented*. They made it a special space madness so they had an excuse to drag out those tropes and wallow in them without conflicting with contemporary knowledge of the realities of mental illness, post-traumatic stress, etc.
With this Steam-Powered Prosthetic Arm, I Could Be As Strong as… A Normal Person [Note: This post has some problematic content, such as using the term “wheelchair bound”, but overall I think it’s interesting and worth reading.]
Steampunk, as we all are aware, draws its inspiration from the Victorian era, which, for all its accomplishments, wasn’t very good to people with disabilities. Halifax, where I live, has a few Heritage Houses, many of which were built during the era, and it doesn’t take much to see that most of them are wheelchair-inaccessible. By and large, disability issues fall off the steampunk radar. That doesn’t mean there aren’t any steampunks with disabilities. Out of curiousity, I put out feelers on Brass Goggles.
In fact, there are quite a few, and disabilities don’t really stop anybdy — Mark F. has been living with chronic muscle and join pain for 30 years (plus osteoarthritis; we should note that for many, it’s never just one illness, but a whole clusterfuck of problems which exacerbate each other), and yet has managed to refurbish an entire work cubicle, among other projects. Many other steampunks with disabilities also involve themselves with the physical side of steampunk: DIY, costuming, conventioneering.
*WARNINGS apply to this post – descriptions of assault and abuse of people with disabilities, including sexual abuse*
In the news:
In an eleventh-hour intervention, Alan Johnson told MPs that he had “stopped the clock” on proceedings to give Mr McKinnon’s lawyers time to consider medical reports and make legal representations.
Mr McKinnon, 43, from Wood Green, North London, suffers from Asperger’s syndrome, a form of autism. He says that his hacking of Pentagon computers was nothing more than him searching for reports of UFO sightings.
Feel free to send me anything you think I’d like to look at to firstname.lastname@example.org