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Sep. 6th, 2012 10:40 pm
90 minutes
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nightengalesknd I love working with children with autism and other developmental disabilities. I love learning about strategies that will help my patients communicate better, have better days at school, sleep better, cope better. I love learning about resources that can help my patients participate in the community, learn new skills, connect with others, be more comfortable with themselves. I can listen to people talk about strategies for hours on end. As an autistic who has autism and disability as special interests, I can cheerfully read, talk and think about these subjects for hours on end.
But I’ve come to learn that my tolerance sitting through talks on autism in most professional settings is about 90 minutes. Around the 90 minute mark, I generally want to start throwing heavy objects. In many cases, especially in biomedical talks, that’s about how long it takes someone to get from identification to cause to prevention to cure. In other cases, that’s how long it takes for someone to make one comment too many assuming that the entire audience is comprised of non-autistic people who are the parents, teachers, doctors and other caregivers of those autistic people. But there’s almost always something.
Last week I went to a continuing medical education event on the subject of child and adolescent psychiatry, specifically psychopharmacology. Meeting topics including eating disorders, anxiety, depression and autism. We don’t deal much with eating disorders in my field, or at least not with the direct treatment of people with them, but we do deal with anxiety and depression, and we sure-as-shooting deal with autism. And there were three hours devoted to autism. I found it educational, and also reassuring, in that my difficulty finding effective medications for some of my patients is a difficulty shared by leading experts in the field, and not just a sign of my inexperience. And the speaker did make a point I like, that trying to eliminate “self-stimulatory” behavior is probably a mistake, unless the behavior is actually harmful. His reasoning was partly practical – and true – that one may successfully eliminate a problem behavior, only to have it replaced by an even more problematic behavior. But he also mentioned that many people find their stims comforting and there’s no good reason to remove something comforting that may be a coping mechanism.
And then, about halfway into the second hour, at just about the 90 minute mark, he started talking about “real autism.”
He meant “low functioning,” of course. Or he meant “non-verbal.” Or both. And he kept stressing that much of what he was describing only applied to those with “real autism,” and real problems related to “real autism”. Now, some treatments and approaches probably are better suited to some patients than to others. For example, individuals who are already highly verbal may not benefit from communication boards, while individuals who have limited communication and are visual learners may not find social stories as helpful. There’s a reason I meet each child and family and collect information on strengths and challenges, rather than making recommendations simply based on the diagnosis of “autism.” So it’s not talking about people with autism as people with a diverse set of traits and needs that got me, but the lumping of only some of those people into the “real” category.
But it was a professional talk, about pharmacology, with three of my colleagues present, so I couldn’t do what I wanted, which was to stand up and ask if that meant the rest of us had “fake autism.” Or find a heavy object.
The next day I went to our local autism conference, sponsored by our state Autism Society, a local autism-related foundation and some other organizations. I went last year as well. It includes a mixture of talks from medical professionals, psychologists involved in autism research or diagnosis and parents. The audience is largely parents, with the rest being professionals who work with children with autism. This year, they had ticky boxes on the registration form for “individual with autism,” in addition to “family member of a person with autism,” “medical professional,” “educator” and so on. So taking a deep breath, because I’m not “out” at work and I know some of the organizers through work, I checked off both “individual” and “medical professional.” I excitedly signed up for a session on “autism and adulthood.”
In retrospect, I wonder if they asked about “individual” because they wanted an accurate head count for lunch and needed to account for children who had been brought along by their parents. Nothing said during any of the sessions spoke directly to the autistic experience. Some researchers spoke about research. One was otherwise scientific and impartial, and actually really fascinating about early identification of infants, until suddenly a slide appear proclaiming autism as “a devastating condition.” I must be inured to having my life described as devastating in public fora, because I merely sighed rather than searching for the nearest blunt object. I even spoke with her afterwards, mentioning how highly a mutual colleague speaks of her, without mentioning that slide. A parent who now works for Autism Speaks addressed some of the challenges facing military families who have children with autism. Apparently their access to ABA has been in shambles. I was sort of fascinated, because my Tricare patients, those with military health care, are the only ones who have gotten any ABA in the past year without paying out of pocket. Most of my patients are on a waiting list and can wait for a year or longer. I didn’t tell her that Autism Speaks doesn’t speak for me, a feat I managed by avoiding her and the Autism Speaks table entirely.
The keynote speaker was a young adult sibling of an older teen with autism. He spoke well, and he spoke realistically, and he certainly didn’t present a life of pure horror. He presented a story to which I imagine most folks present could relate. Although I’m not a parent and I’m not a sibling, I’ve been a caregiver and could relate to some of it myself. But I could also relate to some of his descriptions of his brother. I don’t know if anyone else in the audience felt that way, but I know it wasn’t expected of us.
The talk on “Autism and Adulthood” was run by someone I know well through work, the mother of an older teen with autism. She works for our state parent to parent support group for children with special health care needs and facilitates a social group of teens and adults with autism. And she started her workshop asking for a show of hands of parents and a show of hands of professionals. I raised my hand as a professional, because I am, and then waited for the obvious question which never came. Most of the parents had adolescent children and it turned out to be a workshop on transition services, IEPs, vocational rehab, group home/day hab opportunities. She mentioned the social group she facilitates and several other similar groups in other parts of the region. She even did mention the state autism society as having message boards for both parents and people with autism, for those looking for social outlets for their adult children.
I know her well enough that I was able to point out afterwards the forgeting of autistic adults as potential participants in a conversation about autism and adulthood. I asked if the conference meant to exclude the group of people being talked about and outlined some ways I thought it could be made more inclusive. I suggested asking the adults in the group she facilitates if they would be interested in attending a conference on autism and what topics they might want to see addressed and looking for autistic adults to speak, perhaps on working or going to college with autism. What I wanted to say is that making autistic adults truly welcome would also have to include asking speakers to stop describing their lives in negative ways every 90 minutes.
A few days after that, I attended a talk given by two local self-advocates with disabilities called “Different, not less.”. It was part of our local TED thing, which I don’t even pretend to understand. That parent who had run the “autism and adulthood” session was there – she was actually the one who had told me about the event. Both live speakers were adults with cerebral palsy, but their points were largely pan-disability. There was a third “speaker,” a woman with a visual impairment, which was shown as a video recorded at the national TED meeting a few years back. The point of the talks wasn’t any particular disability, but on labels and identity and living with disability.
The talk was ASL interpreted. I don’t know if anyone in the room needed ASL interpreting or not, but there it was. The talk was also CART interpreted. I don’t know if there were any Deaf, deaf or hearing-impaired people in the room who benefited from the captions, but I know I was not the only hearing person who did when the audio portion of one video was sub-optimal. I wasn’t the only one with a visible disability in attendance, although most of the audience seemed to be people who came to local TED talks in general.
One speaker coordinates a local distribution center for a national retail company. 40% of the center employees employees have disabilities. She describes going on job interviews herself and getting the “Oh My God!” look, working for voc rehab, and glowed as she described the delight of getting “her people” jobs for competitive pay in a regular workplace. Other companies send people to her for training on how to build similar inclusive workplace environments. The other works for a local ministry for young people with disabilities. Now I’m not about to join any ministry myself, and I wish there were more of a non-secular disability community around, but I’m glad it exists for people who want it. I actually had met him at that autism conference, where he was tabling for his group and we’d traded a few stories. During his talk, he spoke of convincing his young children that the “handicapped parking” icon had been modeled on him. For years they would point in the grocery store lot and say, “There’s your picture, daddy!”
I laughed so hard I almost cried. I almost cried anyway. I miss the disability community that I currently only have online. I miss the shared experiences. Most of all, I think I miss the jokes. I guess I'm a little lonely.
I work in disability all day, every day, where disability is expected and acknowledged, and “them.” So seldom am I in spaces that acknowledge my existence and the existence of people like me. The ASL and CART interpreters made me feel safe. Free-text spaces to request accommodations at events makes me feel safe even if I don’t need any accommodations for that event. Speakers who say, “if you don’t have a disability” to the audience at large, rather than assuming no one does, goes a long way towards inclusion.
In that room, with those speakers, adults speaking for themselves and others, with and without disabilities listening, I felt completely comfortable. It was the antidote I needed to make up for the week before. But the event only lasted a little over 90 minutes.
I just arrived at a national conference for professionals in the field of developmental and behavioral pediatrics. We are going to be talking about autism and other disabilities for the next 4 days. National experts will be presenting all sorts of data on ways to identify, evaluate and treat children with developmental disabilities. I’m one of the people identifying, evaluating and treating, and am attending the conference from that perspective. But I’m also one of the people some of those children will grow up to be.
If it’s anything like last year, I’m expecting to network and to learn a lot. But mostly I’m hoping not to be excluded every 90 minutes.
But I’ve come to learn that my tolerance sitting through talks on autism in most professional settings is about 90 minutes. Around the 90 minute mark, I generally want to start throwing heavy objects. In many cases, especially in biomedical talks, that’s about how long it takes someone to get from identification to cause to prevention to cure. In other cases, that’s how long it takes for someone to make one comment too many assuming that the entire audience is comprised of non-autistic people who are the parents, teachers, doctors and other caregivers of those autistic people. But there’s almost always something.
Last week I went to a continuing medical education event on the subject of child and adolescent psychiatry, specifically psychopharmacology. Meeting topics including eating disorders, anxiety, depression and autism. We don’t deal much with eating disorders in my field, or at least not with the direct treatment of people with them, but we do deal with anxiety and depression, and we sure-as-shooting deal with autism. And there were three hours devoted to autism. I found it educational, and also reassuring, in that my difficulty finding effective medications for some of my patients is a difficulty shared by leading experts in the field, and not just a sign of my inexperience. And the speaker did make a point I like, that trying to eliminate “self-stimulatory” behavior is probably a mistake, unless the behavior is actually harmful. His reasoning was partly practical – and true – that one may successfully eliminate a problem behavior, only to have it replaced by an even more problematic behavior. But he also mentioned that many people find their stims comforting and there’s no good reason to remove something comforting that may be a coping mechanism.
And then, about halfway into the second hour, at just about the 90 minute mark, he started talking about “real autism.”
He meant “low functioning,” of course. Or he meant “non-verbal.” Or both. And he kept stressing that much of what he was describing only applied to those with “real autism,” and real problems related to “real autism”. Now, some treatments and approaches probably are better suited to some patients than to others. For example, individuals who are already highly verbal may not benefit from communication boards, while individuals who have limited communication and are visual learners may not find social stories as helpful. There’s a reason I meet each child and family and collect information on strengths and challenges, rather than making recommendations simply based on the diagnosis of “autism.” So it’s not talking about people with autism as people with a diverse set of traits and needs that got me, but the lumping of only some of those people into the “real” category.
But it was a professional talk, about pharmacology, with three of my colleagues present, so I couldn’t do what I wanted, which was to stand up and ask if that meant the rest of us had “fake autism.” Or find a heavy object.
The next day I went to our local autism conference, sponsored by our state Autism Society, a local autism-related foundation and some other organizations. I went last year as well. It includes a mixture of talks from medical professionals, psychologists involved in autism research or diagnosis and parents. The audience is largely parents, with the rest being professionals who work with children with autism. This year, they had ticky boxes on the registration form for “individual with autism,” in addition to “family member of a person with autism,” “medical professional,” “educator” and so on. So taking a deep breath, because I’m not “out” at work and I know some of the organizers through work, I checked off both “individual” and “medical professional.” I excitedly signed up for a session on “autism and adulthood.”
In retrospect, I wonder if they asked about “individual” because they wanted an accurate head count for lunch and needed to account for children who had been brought along by their parents. Nothing said during any of the sessions spoke directly to the autistic experience. Some researchers spoke about research. One was otherwise scientific and impartial, and actually really fascinating about early identification of infants, until suddenly a slide appear proclaiming autism as “a devastating condition.” I must be inured to having my life described as devastating in public fora, because I merely sighed rather than searching for the nearest blunt object. I even spoke with her afterwards, mentioning how highly a mutual colleague speaks of her, without mentioning that slide. A parent who now works for Autism Speaks addressed some of the challenges facing military families who have children with autism. Apparently their access to ABA has been in shambles. I was sort of fascinated, because my Tricare patients, those with military health care, are the only ones who have gotten any ABA in the past year without paying out of pocket. Most of my patients are on a waiting list and can wait for a year or longer. I didn’t tell her that Autism Speaks doesn’t speak for me, a feat I managed by avoiding her and the Autism Speaks table entirely.
The keynote speaker was a young adult sibling of an older teen with autism. He spoke well, and he spoke realistically, and he certainly didn’t present a life of pure horror. He presented a story to which I imagine most folks present could relate. Although I’m not a parent and I’m not a sibling, I’ve been a caregiver and could relate to some of it myself. But I could also relate to some of his descriptions of his brother. I don’t know if anyone else in the audience felt that way, but I know it wasn’t expected of us.
The talk on “Autism and Adulthood” was run by someone I know well through work, the mother of an older teen with autism. She works for our state parent to parent support group for children with special health care needs and facilitates a social group of teens and adults with autism. And she started her workshop asking for a show of hands of parents and a show of hands of professionals. I raised my hand as a professional, because I am, and then waited for the obvious question which never came. Most of the parents had adolescent children and it turned out to be a workshop on transition services, IEPs, vocational rehab, group home/day hab opportunities. She mentioned the social group she facilitates and several other similar groups in other parts of the region. She even did mention the state autism society as having message boards for both parents and people with autism, for those looking for social outlets for their adult children.
I know her well enough that I was able to point out afterwards the forgeting of autistic adults as potential participants in a conversation about autism and adulthood. I asked if the conference meant to exclude the group of people being talked about and outlined some ways I thought it could be made more inclusive. I suggested asking the adults in the group she facilitates if they would be interested in attending a conference on autism and what topics they might want to see addressed and looking for autistic adults to speak, perhaps on working or going to college with autism. What I wanted to say is that making autistic adults truly welcome would also have to include asking speakers to stop describing their lives in negative ways every 90 minutes.
A few days after that, I attended a talk given by two local self-advocates with disabilities called “Different, not less.”. It was part of our local TED thing, which I don’t even pretend to understand. That parent who had run the “autism and adulthood” session was there – she was actually the one who had told me about the event. Both live speakers were adults with cerebral palsy, but their points were largely pan-disability. There was a third “speaker,” a woman with a visual impairment, which was shown as a video recorded at the national TED meeting a few years back. The point of the talks wasn’t any particular disability, but on labels and identity and living with disability.
The talk was ASL interpreted. I don’t know if anyone in the room needed ASL interpreting or not, but there it was. The talk was also CART interpreted. I don’t know if there were any Deaf, deaf or hearing-impaired people in the room who benefited from the captions, but I know I was not the only hearing person who did when the audio portion of one video was sub-optimal. I wasn’t the only one with a visible disability in attendance, although most of the audience seemed to be people who came to local TED talks in general.
One speaker coordinates a local distribution center for a national retail company. 40% of the center employees employees have disabilities. She describes going on job interviews herself and getting the “Oh My God!” look, working for voc rehab, and glowed as she described the delight of getting “her people” jobs for competitive pay in a regular workplace. Other companies send people to her for training on how to build similar inclusive workplace environments. The other works for a local ministry for young people with disabilities. Now I’m not about to join any ministry myself, and I wish there were more of a non-secular disability community around, but I’m glad it exists for people who want it. I actually had met him at that autism conference, where he was tabling for his group and we’d traded a few stories. During his talk, he spoke of convincing his young children that the “handicapped parking” icon had been modeled on him. For years they would point in the grocery store lot and say, “There’s your picture, daddy!”
I laughed so hard I almost cried. I almost cried anyway. I miss the disability community that I currently only have online. I miss the shared experiences. Most of all, I think I miss the jokes. I guess I'm a little lonely.
I work in disability all day, every day, where disability is expected and acknowledged, and “them.” So seldom am I in spaces that acknowledge my existence and the existence of people like me. The ASL and CART interpreters made me feel safe. Free-text spaces to request accommodations at events makes me feel safe even if I don’t need any accommodations for that event. Speakers who say, “if you don’t have a disability” to the audience at large, rather than assuming no one does, goes a long way towards inclusion.
In that room, with those speakers, adults speaking for themselves and others, with and without disabilities listening, I felt completely comfortable. It was the antidote I needed to make up for the week before. But the event only lasted a little over 90 minutes.
I just arrived at a national conference for professionals in the field of developmental and behavioral pediatrics. We are going to be talking about autism and other disabilities for the next 4 days. National experts will be presenting all sorts of data on ways to identify, evaluate and treat children with developmental disabilities. I’m one of the people identifying, evaluating and treating, and am attending the conference from that perspective. But I’m also one of the people some of those children will grow up to be.
If it’s anything like last year, I’m expecting to network and to learn a lot. But mostly I’m hoping not to be excluded every 90 minutes.
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I've been horridly subversive at work. 2 weeks ago I gave a joint presentation about cultural issues in child development and behavior. My co-presenter already had stuff about disability culture and parents with disabilities. I added a bit, and also mentioned Autism culture (the culture of non-autistic parents and professionals) and Autistic culture (of adult autistics)
Then THIS week I was assigned to give a case presentation of "a child with autism." I chose an older child, a girl, who talks, and included in the presentation things she said and some of her self-perceptions, not just descriptions other people gave of her behavior. Then I started talking about autism/aspergers in women vs men and managed to sneak in a slide listing autistic bloggers as well as a picture of the book Aspergirls (that I haven't actually read yet but plan to)
In 2 weeks I have to present a journal article that in some way relates to autism. It has to have numbers and data, rather than focus groups or something. I'm planning to look for something that uses autistic people's input and not just that of their parents/teachers/therapists, either something on anxiety, or something on response to social skills groups.. . or something.
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Because when we talk about children with autism, we talk about becomming non-autistic as the ultimate goal, and behaving less autistic as a reasonable lesser goal. We quote how others describe their behavior rather than asking them how they feel. We talk about their having meltdowns when the routine changes, rather than asking them how they feel when routine changes. Some of our patients are too young or otherwise unable to answer these questions, and we forget that some aren't.
We assess the effectiveness of social skills groups by asking their parents if they talk to other kids more, rather than asking the kids themselves if they feel more comfortable at school or are getting teased less. We certainly don't talk about autistics growing up to have their own culture and cultural values compared to those of their non-autistic parents. We don't talk about autistics as resources for each other. Because we put together a panel about teens with disabilities transitioning to adult services and forget to invite any people with disabilities to speak, and we put together a workshop specifically devoted to adult issues in autism and forget that there might be autistic adults there. Not just the specific people running these specific events, but online and in person, in research aritcles and lay media presentations, we don't talk to autistic people about autism.
The assignment "A child with autism" was expected to be a presenation on a 3 year boy who says a few words, repeats lines from Thomas the Tank Engine and flaps his hands. I figure I was being subversive by following the letter of the assingment while finding a way to show autistics speaking for and about themselves
I am going to two workshops this weekend, one on teaching cultural competency as it relates to teaching child development, and one specifically on cultural considerations in the diagnosis of autism. If either one of those talks mentions disability culture or autistic culture in any shape way or form, I'll be amazingly pleasently surpirsed. It just Isn't Done.
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I chose an older child, a girl, who talks, and included in the presentation things she said and some of her self-perceptions, not just descriptions other people gave of her behavior.
Now that's just silly! We all know that medical professionals, parents, and/or caregivers are more qualified to talk about her perceptions and how she experiences the world than she is!
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But it was a professional talk, about pharmacology, with three of my colleagues present, so I couldn’t do what I wanted, which was to stand up and ask if that meant the rest of us had “fake autism.”
Why not?
I’m not “out” at work
Why not?
Both live speakers were adults with cerebral palsy
Nonsense. Adults with CP are magical unicorns; we do not exist! :p
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Why am I not out at work.
Because, rightly or wrongly, I'm worried about losing professional credibility in the community if word gets out I'm "the doc with autism." Because I'm still in training and don't have a foothold yet and I have to survive my training program which means my patients need to trust me. Because I don't want to become a poster child. Because I don't want to be seen as the only exception to the rule that autistics can't do things, and if I come out, I risk becoming the message. For example, they might ask me to speak at next year's local autism conference, as some shining inspiration, instead of searching themselves and their perceptions and finding other adult autistics in the community who have important things to say.
Because I'm not sure if everyone would believe me and it's not a fight I feel like having with some of my supervisors. Because I'm friends with a psychologist at work who says sooner or later with the diagnostic criteria "everyone's going to have autism" and she might consider me as lumped into that overdiagnosed category. Because I work with an ADHD expert who says a kid with an imaginary friend argues against him having autism because autistic kids don't do that, right? Because I work with an autism expert who got interviewed about the new numbers and said "don't panic" because the numbers might be wrong, not because autism isn't a panic-worthy thing.
Because it's hard enough being a doctor with CP and having to explain it over and over and I don't have the spoons to start all over with another condition that has even MORE stigma and misperceptions. Because I'm also trying to learn everything I need to do my job, take care of kids, get my paperwork done and do my research and can't face adding something else on top of that. Because I want to do pan-disability advocacy in the medical field and not just autism advocacy, and once you go down autism street it's hard to back up. Because, really sadly, I think some people will listen to me now when I talk about adults with autism who might not listen if they thought I was one because they would focus on the messenger over the message.
I've told a few people at work, and will likely tell a few more. But I'm not ready to be completely out yet. That's an irreversable step that right now I'm just not ready to take. Unlike the CP, I don't need to disclose to get vitally needed acommodations, and unlike the CP, it doesn't have obvious visible manifestations. I come off as anxious and eccentric but not precicely autistic. I've told people what they need to know, without the label. They know I hate to travel and like my routines. They know my visual processing skills are pitiful (I recently tested an 8 year old with an intellectual disability who has better visual processing than I do.) They know I don't drive well. And I work with some smart cookies where autism is concerned, and some of them that I haven't told may well have guessed and that's fine.
But I'm out with CP and I'm out as Jewish, and as a Yankee and as a GLBT ally and generally politically liberal, and some of those are Big Deals where I live right now. And it takes a lot of extra energy, so I'm trying to save some where I can by not being out as asexual and autistic too. I don't particuarly enjoy being in the closet, but having weighed all the pros and cons I can think of, right now it seems like the better course of action.
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ITA.
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By my count, there were at least three adults with CP in that room. It didn't explode.
But that's UMPOSSIBLE!
I come off as anxious and eccentric but not precicely autistic.
Oh, hello me! :p
They know my visual processing skills are pitiful (I recently tested an 8 year old with an intellectual disability who has better visual processing than I do.)
That doesn't surprise me a bit.
I don't particuarly enjoy being in the closet, but having weighed all the pros and cons I can think of, right now it seems like the better course of action.
Yeah, I get it now. I also keep forgetting where you are at the moment... ugh. I bet you can't wait for that program to be over so you can get out of there!
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It's just that health care, even health care related to the care of people with developmental disabilities, isn't really ready to accept adults with developmental disabilities as full peers. I plan to work to help get it that way, but it's going to take time and I just can't do everything at once.
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Ah, so it's just the area you dislike. I can understand that.
It's just that health care, even health care related to the care of people with developmental disabilities, isn't really ready to accept adults with developmental disabilities as full peers. I plan to work to help get it that way, but it's going to take time and I just can't do everything at once.
I understand, believe me.
And if they can't accept adults with developmental disabilities as peers, that kind of tells you what they think of their patients, doesn't it? Obviously they don't expect much out of them, or that they'll be capable of much. Surely that attitude must come across somewhat.
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I was good it's week one I bit my tounge let's not make too many waves before I need to. Particularly as today is going to be tougher than normal as I had an accident yesterday and will be on crutches for a little while!
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I don't think I have more patience than you. I spent most of medical school raging about what people said about disability and chronic illness, both in general and to me in particular. I tried talking to some of the people individually, and I tried talking to the administration about the problem collectively. I actually did get through to a few people, but I mostly got labeled as an oversensitive troublemaker. I spent so much of medical school seething in rage that I made a deal with myself: I would only address problems at the school that affected my physical health, mental health or chance at graduation. The other things I would try to let go. Sadly, that school had so many problems, disability related and otherwise, that I still felt as though I spent all my time seething.
Now I'm trying to educate and change the system from the inside.
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Autism Spectrum Disorders and Visual Impairment Are Here to Stay: Using an Expanded Core Curriculum to Implement a Comprehensive Program of Instruction
This is located in the June, 2011 issue of the Journal of Visual Impairment and blindness.
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Optic Nerve Hypoplasia and Autism: Common Features of Spectrum Diseases
Hope this is helpful.
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It does drive me crazy when sighted professionals say things I totally disagree with. One of the managers in our office saw me reading braille the other day and was like, "I find that amazing, you read so fast!!!" I felt like asking her why reading (and it's not like I was speed-reading) was amazing, she does it every day ...? Argh. I hate the term "amazing" because when something everyday like reading is amazing, it puts the truly amazing things out of reach in terms of expectations. But then, braille is nearly non-existent in the adult blindness community, which I'm also finding difficult because not many seem to understand why this bothers me ...
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And sometimes I disclose and sometimes I don't, and sometimes I discuss traits without the label (for example, talking about liking my routines but not saying I'm autistic) depending on the audience, my relationship with them and a zilliion other factors.