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Wednesday, November 30, 2011

Showcase: Sarah McCullochs's The Reality of an Autistic Person


The Reality of an Autistic Person

Autistic sweetiepie boy with ducksinarow The Reality of an Autistic Person
Imagine you’ve gone to a different country, one where people speak your language but the way they live their lives is completely different to how you do it. Any time you ask someone a question, like what sort of currency they use or what public transport is available, they look at you like you’re crazy and tell you that you should already know. Worse, every so often, others will tease you and point you out to other people as someone who doesn’t get the simplest things. Angry, frustrated and confused, you give up asking questions and try to avoid having to speak to anyone about things you don’t understand. You try to work out what’s going on by watching the other people around you and trying to copy what you see for the duration of your stay.
Now imagine that you are autistic, that that country is your society, and the duration of your stay is the rest of your life. This is the reality for autistic people. We have no idea, literally, what you think you are doing when you ask us to go for a quick drink in the pub. This won’t apply to everyone of course, but for many autistic people, a typical thought cycle on being asked to go for a social drink in the pub is something like this: “Where am I going to sit? What are we going to talk about? When will it be appropriate to leave? What if there’s an awkward silence? How do I order a drink? What if there’s a queue? How do I queue? Why do people all crowd around the bar if I need to queue, where should I stand? How do I know what to order? How will I know how much that costs? If I’m going with this person, are we going to queue together? Who goes first? If I get a drink first, how am I going to decide where to sit? Should I stand with the other person while they get a drink? If so, are we going to make small talk? What are we going to say? If they get their drink first, should I ask them to wait? Should we choose somewhere to sit that’s quiet so I can hear them, or somewhere I can use the surrounding environment to act as distractions for me or opportunities to say things? When we sit down, how quickly should I drink my drink? If I drink it quicker than them, does that make me look bad? Is it acceptable to buy another one if they drink much slower than me? If I drink really slowly, are they going to feel obliged to not buy another drink if they want to because of how slowly I am drinking? I don’t want to ask any of this of the other person, they’ll think I’m stupid. Normal people don’t ask these things. I can’t deal with it. I won’t go.”
That’s before you even get to the art of attempting to hold a conversation with something that isn’t exclusively on your obsessive interests. The sheer anxiety of having to answer all of these questions will perhaps explain to you why I refused to go to any event exclusively deemed social until I was 19. I went to a grand total of two birthday parties during my entire time at high school, not because I wasn’t asked, but because I found the two I went to so stressful I decided it wasn’t worth going again. While I slowly got over this aversion, to begin with I had to organise socials for different groups that I ran in order to justify my existence in a bar. It wasn’t “social”, it was “work”. That made it marginally less scary. I’m still not a fan. Perhaps those of you reading this will now now why I appreciate being asked to house parties (validation that I am accepted into the group) but don’t actually go (People! Noise! Crowds! Uncertainty!).
The fact that other people don’t get these extreme anxieties and will regard you as weird if you try to deal with them makes it harder to get answers to the questions that make you so anxious. I refused to go to a hairdressers until I was 15 because I thought that the spaceship style hairdryers would burn my head off and I didn’t want to go anywhere near them. I didn’t want to tell my mum about this because the fact that other people were using them clearly meant that there was a reason people were using them that didn’t involve burning their head off, and I thought she would laugh at me. But I couldn’t ask, so I made my mum cut my hair until I finally volunteered to go to a Supercuts – notable for not having hairdryers at all and thereby allowing me to avoid the issue altogether. And even though I am writing this as if I’m over it, I still haven’t set foot in a hairdressers that has one…
Maybe you think that if my parents had tried to socialise me at an earlier age, this wouldn’t have been a problem. Well, they did try. My mum used to try to invite other children round when I was small, but I didn’t like them because I thought they were boring. I refused to invite anyone from school round during the holidays: when my mum asked why, I replied, “I see them all the time at school, why would I want to see them out of it?” I spent my time reading, watching children’s TV, and making mud pies in the garden. I enjoyed reorganising cupboards and making inventories of my toys. I obsessively played the same 15 songs that I really loved over and over again. I was mostly alone, I enjoyed being alone, and when my parents tried to take me to play with other children, I made it very clear that I didn’t want to be anywhere near them. But sometimes parents’ well-meaning efforts to “socialise” their child can make things a great deal worse: when I was 8, I was taken to a friend’s birthday party. I got there to discover it was at a sports centre and everyone was playing games. I was dressed in sports gear, handed a hockey stick, and expected to immediately join in a loud hockey game I didn’t know the rules to with 12 children I’d never met in my life. I totally freaked out, refused to leave the bench, and sat watching the game until I was rescued from my parents’ anger by the birthday child’s mother, who let me play computer games outside the sports hall. My parents decided to punish me for *their* humiliation and took me home before the lighting candles on the cake, the part of the party where I knew what I was supposed to be doing and knew I’d get cake as a reward for awkwardly singing “Happy Birthday”. That experience largely stopped me wanting to go to birthday parties again. I still feel bad when I think about it now.
The autistic community is largely united in spending a great of time alone in their childhood, but are split into two different camps on whether that was because they wanted to play with other children and couldn’t work out how or were rejected by them, or whether they actually just didn’t find other children interesting and wanted to ignore them. I was largely in the latter camp and it wasn’t until I hit puberty that I really noticed the existence of other people at all. That might seem strange to you, but I really did view other people as walking furniture that were as relevant to my life as the table I sat at. I talked to them when I wanted to get something done, and I cried when they were cruel to me, but that was as far as it went. The only reason I wanted friends was so I had someone to sit next to when we had to sit down and I didn’t have to deal with the anxiety of working out where to sit or being bullied for sitting alone. The happiest memories I have of my childhood was when the people around just let me get on with my thing and went with what my history teacher kindly called my idiosyncrasies. At holiday club, I built a shelter out of a table and tablecloth and spent a lot of time just sitting in it – a wise youth worker told the other children not to bother me and I really enjoyed that particular summer. A cool RE teacher used to throw all the other kids out of the reception room after school and let me stay and read the room’s bookshelf on my own.
By contrast, when I was 17, someone sat in my chair in History. I asked them to move. They refused. I appealed to my teacher. She told me to sit down and stop being silly. I sat on my bag next to her and proceeded to make pointed comments about how I wanted my chair back for the next twenty minutes. My history teacher told me to stop being a bully and get over it in front of the entire class. I uncontrollably burst into tears and had to leave the rest of the lesson. It was incredibly and mortifyingly embarrassing for me and my teacher, who told my class that no-one was to ever sit in my chair again. They didn’t.
I should point out that none of that was explainable at the time. If you had asked me as I sobbed my eyes out in the school toilets why I cared so much about sitting in “my” chair, which was no different from any other chair in the room, I wouldn’t have been able to tell you. Now I can tell you that it’s an aspect of autism to keep the same routines as much as possible in order to avoid anxiety over the uncertainty of having to make a choice. Sit in the same place, eat the same food, wear the same clothes, and you don’t need to deal with the paralysis of having to choose between more than one option. All of my socks are exactly the same colour so I don’t have to worry about it. You can work out ways to deal with things that make people think you’re a massive weirdo, but I don’t think they will ever go away. Maybe you think I don’t seem that bothered anymore about people sitting in the same chair that I always sit in? Maybe you didn’t notice that I sit as close to that chair as possible…
My life changed when I hit 18, left home, and had a chance midnight conversation with a flatmate who was sufficiently drunk he didn’t mind repeating himself over and over again until I understood that I had no regard for the feelings of other people because I hadn’t really considered that other people had feelings. That might sound a bit cold to you, and perhaps a bit strange that I had made it to the age of 18 without realising that, but that’s how undiagnosed autism works. You don’t realise you have a problem negotiating other people’s feelings and social cues because you actually aren’t aware that there *are* other people’s feelings and social cues that are different from your own, let alone that you aren’t paying attention to them. All we understand is that authority figures and peers punish us for things that they won’t explain properly, and we don’t know why. You can learn that people get upset when you shout at them when you’re angry, but you’re simply observing the reaction rather clinically. Making the link between how you feel when people shout at you when they’re angry and how other people feel when you do it to them, and the fact that these two feelings may well be different, doesn’t happen automatically the way it does to other people.
This is especially true if, as is the case for many autistic people, you look down on emotion as illogical (if *anyone* says this to you, break out the diagnostic tools). Maybe you’ve had a conversation with an oblivious autistic person who’s just upset someone and you’re trying to explain why and you say “And so when they asked you if they looked fat and you said ‘yes’, they felt sad”, that person replied, rather surprised, “But they shouldn’t, that’s stupid” (again, if anyone says this, test ‘em). A lot of well-meaning people will then say “But how would you feel if someone said that to you?” and get the response, “Well, it would be true. Why would I feel down?” It’s hard to deal with that kind of approach, and in my experience, accepting that other people have emotional reactions over stuff that doesn’t make sense to them is one of the most profound and conscious-raising realisations an autistic person can make. Certainly the moment I realised that my comments on my flatmate’s tennis-playing skills were factually true but had nonetheless hurt him in a way that I hadn’t intended, and that he didn’t accept, “But you shouldn’t feel that way” as a reason to stop being hurt, was one of the most significant moments in my life so far.
An important corollary to this is that just because the autistic person just said “but they shouldn’t feel that way”, doesn’t mean that they themselves won’t. Someone may well then call that autistic person fat one day, or tell them they have a friend who would beat them at tennis, and they will be upset by it, but duly apply their own value system and deem their feelings irrelevant. A struggle will then ensure between the urge to be upset and the feeling of disgust that they are feeling upset. This can often result in an autistic people refusing to believe that they are sad, or refusing help and support for depression, because they shouldn’t be having those feelings at all. This can be pretty catastrophic in relationships with non-autistic people if it doesn’t get picked up. The self-aware autistic person has to learn to accept that both they and other people can have a variety of emotions, that that is ok, and that whatever they and the other person is feeling has to be worked into their logical response to things.
Reaction tends to be mixed when I tell people I’m autistic now. A lot of people with experience of autism say, “Yeah, totally, that’s cool.” Others say, “Nah, you don’t seem autistic. You’re just a bit blunt.” Some will flat out tell me that I’ve been misdiagnosed and I couldn’t possibly be autistic in their opinion. I think that’s for two reasons. The first is that I have known that I’m autistic for four years. That’s a lot of time in which to sit down and actively work out how to fit into society, to realise why you feel uncomfortable in various situations and work out ways to cope with them. I know what I can deal with and what I can’t, so you’ll rarely catch me in a situation where I’m being “weird” because I don’t know what to do or feel very anxious. I think the other reason is that if you aren’t an arm-flapping, constantly interrupting, space-obsessed Aspie of the most unself-aware order, people will refuse to believe that there’s anything wrong with you. Because they perceive autism as being something “wrong with you”. It’s not, it’s just a different way of thinking. The reason we get so distraught over it is because the things that make us tick aren’t understood very well at all – if you look at the internet and medical literature, you’d think autism is something that happens to children, mentally challenged people, and psychopaths. The idea that the work colleague at the desk next to you who just seems extremely driven and antisocial might be consistantly refusing to go to the pub with you because they’re afraid is rarely to be found. As are any explanations as to why your otherwise attentive and charming lover might be unable to conceive of why you would be upset that you told them something heart-wrenching and painful and they had no reaction to it (because they have no frame of reference to refer to in order to know how they should feel).
I find this really annoying because I think autistic people are really cool, although I would. If autism renders you incapable of understanding social cues, it also renders you largely oblivious to accepting the status quo. Polite people call us blunt, others call us rude. I call us honest. If your colleague is being a bully and getting away with it because no-one wants to call them out, often the autistic person, unconcerned about the intricate social webs this person has built around themselves will just say, “Why do you keep saying that we have to work as a team when you keep forcing us to do projects we don’t want and which you don’t help us with?” Autistic people will break omerta. They get hated for it because then the non-autistic people have to deal with the things they were afraid to confront. But wouldn’t the world be a lot more straight-forward and easier to navigate if people just said “We seem to be getting quite close lately. I quite like you and I would like to have a casual sexual relationship with you that might lead to something more if both our feelings change but only if we actively agree that is the case – would you like to have a date on that basis?” Maybe in slightly more romantic language…
Autistic people are also extremely helpful, for the most part. I know few autistic people who if asked a factual question they don’t know the answer to, won’t go off, find it out, and get back to you, usually with references and notes on further information. You’ve piqued our curiosity, and now we want to know the answer as much as you do. This is why I ended up learning about EU official chemical risk and safety phrases last night. All that information then gets stored away for the next person who asks. Autistic people are dedicated to everything they enjoy, including people. If they like you, you won’t find a more devoted and faithful friend or lover. Tell us exactly what you want, in plain language, and you will probably get it. Expect us to mind read, and you’ll both be very unhappy without knowing why (if they’re undiagnosed). So when two self-aware autistic people get together, the result is a ridiculously practical but deep mutual understanding. I really like that.
What I am basically trying to explain here is that autistic people, above all, like certainty. We want to know exactly where we stand, at all times, whether that’s in relation to our parents, teachers, friends, lovers, or socks. If we cannot have that information, we get anxious, confused, upset and “weird”. Give us that information, and autistic people have a lot of really awesome things going for us that we would love to share with you and show you how we see the world. Refuse it, and we’re just more weirdos for you to avoid. But believe me, we’re trying to avoid you, too.

Tuesday, November 29, 2011

Woman With Aspergers Social Mimicry Survey

From womanwithaspergers:


I'm trying to find autistic women to participate in a short, ten-question survey I drew up in an effort to find out more about the phenomenon of social mimicry (i.e. imitation the social behavior of others) amongst Autie/Aspie women. I'm looking for pretty much females on the spectrum of all ages (must be at least 13 to participate), cis- and trans- women, self-diagnosed or officially diagnosed, who wouldn't mind answering a short survey about their social behavior and their imitation of the social behavior of others.

The link to my blog post containing the survey is:

http://womanwithaspergers.wordpress.com/2011/11/22/women-autism-and-social-mimicry-survey/

Tuesday, November 8, 2011

National Study on Parents of Children on the Autism Spectrum


National Study on Parents of Children on the Autism Spectrum
11/1/11

Hello.  My name is Ann Liesen and I am a Doctoral Candidate at Oakland University in the School of Education, Department of Counseling.  I am conducting a dissertation study examining the relationship between parent’s perceived stress and quality of life satisfaction when raising a child with ASD.  I am also exploring coping and social support conditions that influence this relationship. 

If you are a parent raising a child with autism spectrum disorder between the age of birth- 21 years in your family home at least 50% of the time, I welcome your participation. You may contribute to this study by answering a survey as honestly as you can.  The survey should take approximately 20 to 30 minutes of your valuable time.  To participate simply click on the following link

If you know a family member, friend, or acquaintance that is parenting a child on the autism spectrum who may be willing to participate, please forward this link to them.  I am seeking parents of children across the entire spectrum of the ASD community. 

Thank you for your help!  Your contribution will help inform best practice for supporting parents of children with ASD. 

Warmest regards,
Ann Liesen, MA, Doctoral Candidate

To obtain additional copies of the survey: Parents, agencies, and organizations may request one or multiple copies of the survey to be sent to them electronically or by mail by replying to AutismParentResearch@comcast.net.  Please state the number of copies needed, the preferred format for delivery (electronic or by mail), and provide a return address.   To protect anonymity, parents are encouraged to provide a return address that is different from their personal residence.

Paper copies with return envelops may be obtained at the front desk at: 1270 Doris Road, Auburn Hills, Michigan, 48326.

Study closes on January, 31, 2012 @ 11:59pm (EST)

Faculty Sponsor:  Robert Fink, Ph.D.      Phone: (248) 370-2012      Email: fink@oakland.edu

IRB Chair:  Christine Stiller          Phone: (248) 370-4047     Email: cstiller@oakland.edu

Research Approval #:    4845

Wednesday, November 2, 2011

Showcase: Autistic Hoya's "Disability is a Social Construct"


Disability is a Social Construct: A Sociological Perspective on Autism and Disability by Lydia

(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)


Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

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.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.

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