Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, May 31, 2013

Massachusetts State House Hearing Part 4 (H78)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H78, except that it gets put up later. This is in four separate posts, the others can/will be found here:
Lydia Brown's written testimony can be found here.

Trigger Warning: Suicidal ideation, ableism, tragedy/burden talk


H78: An Act to permit the DDS to provide services to developmentally disabled adults. 
 
1st testimony, same as 3rd person from H77. They currently can't do much for adults with IQ above 70 (yeah, I'm doomed if I ever want help.) 46 other states have already made changes that are similar to the ones this bill would do. Broad bipartisan support for this bill. Talks about families struggling to get by and parents worrying. (Meh.) People are meeting criteria for developmental disability, and needing help, but are not eligible for services due to IQ over 70. 
 
2nd testimony: People can lose skills, people can go from 5 days of full time activities to nothing at all. Parents sometimes wind up quitting jobs to supervise (WHY is constant supervision so often assumed to be a thing/people not taught things to not need it? Yes, I get that some people really will need it because of various reasons, but most autistic people can and do get to a point where they don't need it and can be home alone for the day if, say, food is prepared and out. There is generally a workaround for any specific skills.) The bill would determine eligibility based on adaptive functioning instead of on IQ, meaning that there would be more to do with actual needs than before. 
 
3rd testimony, from I think 1st person to testify on H77, the database bill. He's on the board of directors for Aspergers Association of New England, and it's one of their top priorities too. He is autistic himself. His resume is good, but it's a veneer that glosses over many issues. He needs and gets help, now, and wishes he had gotten it earlier. It's never too late- one can teach an autistic adult new things, just as one can teach anyone new things. Services, including the ones that helped him, are hugely important. 
 
Note that ID=intellectual disability, DD=developmental disability, I use the abbreviations because I'm not actually a super fast typist. I'm typically using only one or two fingers on each hand, my right hand is just using the index finger most of the time.
4th: Disability law center person. He's talking about a narrow issue relevant to this issue- where we stand relative to other states in providing services to DD adults. Massachusetts is still trying to fit DD adults into the hole of ID to get services, which causes people to fall through the cracks. Don't just define ID to make it so DD can get in more often, make it so that DD but not ID is still eligible! Found that the eligibility standards for other states were only this picky about ID when there were services meant for those with DD who did not also have ID. Which, if he is correct, means that MA is way the heck behind. Whoops. Considering that disability law is his thing, I'd believe it. (Vermont requires ID or autism, if I recall.)

5th testimony: Aspergers/HFA can and does still need services. Can meant that showering feels like shards of glass to the head, people understanding words but not intent. Can't cook, clean, etc. It's a thing that happens. 75% not working. It's not "mild." It's just a different set of challenges. Even basic services, helping keep the house together, have food, get employment and keep it, could be the difference between homeless and productive taxpaying citizen. I'm pretty sure that this person is not autistic, but is saying mostly reasonable things, I think.
 
6th : Addressing needs for supports in DD but not ID, it depends on the state and is kind of a big issue. There are no services for autistic adults without ID in Massachusetts. We often have awesome skills and just needs a bit of help to be marketable with our skills. Except there is nowhere for us to get this help. We age out and that's it. Age out and transition to nothing. A whole lot of people want to be testifying for this, but can't for whatever reason. Some are autistic themselves, some are family members who are full time caregivers. Everyday living skills are a thing. IQ doesn't mean you have them. And someone needs to help when we don't have them. Heck, there are services I could really use help with that fall under developmental disability stuff. (Doesn't mean the way she's saying the things is great, she is kind of tragedy talk in saying this stuff...)
 
7th: Autistic person. Now only works 3 days a week, looks like it costs money to work, instead of him getting paid. Well, that's an issue. There was a thing that used to have funding, but not anymore as of 2011. If something were to happen to his mother, who is the one paying that money, he doesn't work anymore. Plugs for his show, www.ablevision.org. It apparently did a thing interviewing Temple Grandin. 
Oh, and can we talk about it costing him money to work instead of getting paid to work? THAT'S NOT OK AT ALL. 

 
8th: Also autistic, started off in public school but needed a tutor. School stopped providing the tutor in 4th grade, sat in the back. Eventually wound up in a school for emotionally disturbed children, though not emotionally disturbed themself. No one knew what to do with autism. Went to a residential school for a while. Then community program, graduated HS, takes 1 course at a time in community college and gets help living in own apartment. Says they want to die before parents do because they will have no support. (But if getting actual supports could be a thing? That could be different. Please, I hope it could be different.) IQ tested at 71, so no ID support, but the bill would get them supports. Which they really really need. Seems to feel like a burden, and the whole wanting to die before parents do makes me want to take an axe to society for being a load of ableist fails.

9th: Son has PDD-NOS, does not qualify for services by 2 IQ points, but not fit enough to get services to help him get a job. So he's between the cracks. He needs some sort of support, and doesn't get it. He lists as the first of his good qualities that he's "good at improving," and wants the chance to do so. It's his mother testifying, and I don't think she quite gets the whole "Autistic people can hear you" thing. It's a pretty common issue. Can we stop calling us burdens, thanks? 
 
10th: Has a 12 year old daughter with Aspergers. High IQ, wants to go to MIT and study neuroscience, ability to function in the world is not so great but she can't get services because high IQ. Social skills are also a difficult area for her, so I'm a bit worried about the social skills training that she's probably gotten and that may well have made it worse. Social skills classes tend to do that, setting us up to get abused and all. UGH SHE JUST CONFLATED MELTDOWN AND TANTRUM IT IS NOT THE SAME THING NO NO NO STOP NO NO NO THESE ARE DIFFERENT THINGS. There was one person who says his life is miserable, he can't get services because his IQ is too high, but he can't work without services. Another bright, articulate person, no services, can't work without services. It's a thing. Maybe it's getting an interview, maybe it's executive functioning, maybe it's cooking, needs some sort of help is a common thing.

11th testimony is from a mother who is coming in out of order because she is her son's sole caregiver and he's calling her. He's autistic. IQ tests at 71, functioning, social, self care are all things he needs help with. (She said it was at the 2-3 year old level. Um, can we not do the whole mental/functioning age thing? It's creepy.) But his IQ is 71, so he doesn't get services. She's talking about "managing" him and searching for answers, searching for a way to get him help. And there isn't any, because his IQ is one point too high. Talking about "managing" him is also creepy. This mom creeps me out. 
 
12th: Single low-income parent of two working towards a bachelors degree, her 14 year old son doesn't get services because his IQ is too high. He participates in sports and gets some minimal services, but he needs real services that she can't afford to get. She's trying to keep her GPA up so she can eventually pay, but that's not the current reality. He'll be 18 by then and there will be no supports, joining the 75% of their adult clients who are unemployed. He's awesome, but he needs services to be able to stay out of that 75%. Wow, she's pessimistic about what her son can manage. Sports are better than formal social skills training if he's enjoying them, life skills can be learned later as long as there is someone to teach them. Services are important, yes, but the assumption that he will automatically wind up in that 75%? Working while living at home is a thing that can be done, and it gets around some of the potential issues. 
 
13th: Commission of families and advocates representative, thinks it's a tragedy that this is a huge problem not being addressed, so many of us need services and can't get them. References a November hearing that he says is much like this one. I hope he's not talking about the federal one. Ok, looks like it might not be because there was apparently not media coverage of that one. Meh. I guess that's a good sign, because he seemed to think that hearing was important instead of being a complete mess. Which the House one was... actually, what kind of coverage did that have? Oh crud, it might be that one, all the coverage I remember seeing was in autism or disability media. I guess I'm not surprised, he did seem to be calling us a huge problem that wasn't being addressed, and that it's tragic how the problem that is us isn't getting addressed.
 
14th: Shows a picture of a kid, who has a pile of cool traits and is a computer wizard. Also autistic. Needs services. Sounds like he's bolting from his program- I am not so trusting of the program as his mother is, because I know how widespread abuse is in these programs, and people don't bolt from places where they feel safe. Also, his statement was that he was being abducted for one of these- if he doesn't realize that "abducted" is the wrong word for "These people have the legal authority to take me, but not my consent and I don't want to go," that would be pretty telling. Actually, I don't think we have a single word for that. Because it's not considered to be a thing that's wrong, it's considered to be a thing where the person who doesn't want to go is in the wrong. 
 
15th: Wow this is a lot of testimonials on this bill. Has 3 autistic people in a program with IQ over 70 (Out of 200 autistic people in the program). One of them is 14s son. Still needs help with life, did jump out of a moving van. He just said "mental retardation," which, um, isn't actually a diagnosis anymore. Yeah, little bit not good. It could just be because he's old? Ew ew ew ew ew ew he said it again. Not a fan. I... am a bit more suspicious of the program now than I even was before, listening to him and knowing that he runs it.

16th: LYDIA of Autistic Hoya yay yay yay. She's Autistic. I know her. Is here in support of all 4 put fouth by ASNE and Disability Law. Notes that she works with ASAN. National standard is to use developmental disability definition, which is what H78 would make happen. It would allow people who need the services to get them. Not broaden the kinds of services that exist, but allows more people to get them, improving standard of living. Urges the committee to report favorably on the bill due to its importance in getting more people access to things they need. The fact that she supports it means more to me than any of the other testimonies I've seen, honestly.

17th: She's got a son and a brother. Son with formal dx, brother does not. It's a big thing. Typical development and autistic development are different. And supports are needed. He can miss nonverbal stuff. It's not intuitive, and it's hard. Asks "can you imagine?" Of course I can, I live it. It's hard, but it's not unimaginable. Missed part of her and 18th to talk to Lydia. The thing that squicks me here is the whole "can you imagine?" thing. We are right here. We can hear you. We can do a whole lot more than just imagine it, you're talking about this in a room with a much higher rate of being autistic than the general population and we can understand what you are saying. Why is this so hard for people to get? 
 
18th: Says we can't fend for ourselves is what I notice as he finishes. We're not poor defenseless creatures, sir, we just have a different set of needs. I know we need to sound oh so impaired in order to get services and all, but really? Do we have to be tragedy talk and pity talk instead of just being frank about what the impairments are, what access needs and what service needs we have?


This bill is important. I want it passed. I also want people to remember that we can hear them and understand them. No, really. We can. Intellectual disability doesn't prevent that, and neither does autism. It just messes with how fast we can process it/which things we notice more, seriously how many times do we need to tell you this?

Thursday, May 30, 2013

Responding To A Blog My Teacher Sent Me

 This is the post my teacher sent me: Carestathis, Anna. "Intersectionality & Feminism." KickAction.ca. N.p., 13 Feb. 2008. Web. 24 May 2013. (Yeah, I actually wrote this post on May 24.)
She said she would be happy to discuss it with me at length- I suspect my initial response (below) makes it pretty clear that I've got a decent handle on disability stuff, but that my knowledge about gender stuff and race stuff isn't quite as strong. Which she could probably have guessed given that I said in my introduction how I was coming from disability studies and was taking the class largely because I know I can't be clueless about any marginalizations that can co-occur with disability (basically all of them) and properly understand disability. 

Trigger Warning: References to ableism, racism, sexism, and eugenics.

The word "intersectionality" coming from a metaphor about an actual intersection (Carestathis) makes sense. I'd wondered where it came from. When it can't be determined which "driver" (marginalization) caused the harm, it seems likely to me that it may have been both. I know I've seen times where it's both- I remember reading about how the eugenics movements often used ableism as a weapon with which to be racist.
It looks like discrimination along multiple lines at once, where all the different ways a person is marginalized are relevant, is harder to check for and harder to protect against, at least in our system. I wonder what kind of changes to a legal system it would take to fix that. Maybe a Venn diagram sort of approach would work better than looking at everything individually. People might also not think of the idea that people who are in multiple such groups even exist. I know that happens with being Queer and Autistic because so many people assume that people with disabilities, especially cognitive ones, aren't sexual in the first place and therefore couldn't have a non-normative sexuality. It also happens sometimes with being a woman and being autistic- I know someone who had autism taken off her record at one point because the psychologist actually said "Can't be. She's a girl." Dealing with legal discrimination issues against a group is a lot harder when people don't necessarily realize or accept that the group even exists.
When we get to reproductive rights, this article is talking about what essentially amounts to eugenics where ableism, classism, sexism, and racism are all working at the same time (Carestathis.) I've seen this one a lot from my disability studies stuff. Recently I saw a case where two people who really do have cognitive disabilities were having trouble finding a place to live together after they married, with the husband's group home OK with the idea but unable to provide a place for them to cohabit and the wife's group home insisting that she was incapable of consent. They recently found a different placement where they could cohabit (Dolak.) Given that it was the woman who was considered unable to consent despite other psychologists agreeing that she could, this history of sterilizing the women, and the fact that I have seen court orders forbidding autistic women from sexual relations (Beckford) but not autistic men, the recent cases look like an intersection of disability discrimination and gender discrimination. When ableism gets used as a weapon for racism or classism, it does sometimes also get used against people who actually have disabilities.
On work, I think of the stereotypical black "Mammy" who does domestic work long past slavery legally ended, allowing the white mistress she serves to concentrate on other things. The Live-in Caregiver Program looks disgusting, for all the reasons that they mentioned. It might also tie in with the "White Saviour" trope, though I'm not sure because I'm not quite as familiar with it. If the presumably white people who are putting forth this program think that it is somehow doing a favor for the workers on this sort of visa or is helping them, it sounds like white saviour. The wages for housework thing reminds me of Venezuela's recent move to provide pensions for those who are full time mothers and recognize certain kinds of work traditionally done by women (Ponniah)- this looks exactly like what the people demanding wages for housework were asking for, and might still be ignoring the fact that many people already were doing so in other people's homes for wages while also trying to do so at home. Since Venezuela is a Latin@ country, this might be less of an issue there- it could also be less of an issue if full-time is defined as 40 hours per week and the pension is given to those working at least 40 hours per week as "mother" even if they also do domestic work outside the home.
The state I don't know as much about, but I remember seeing somewhere that many Middle Eastern countries had more women in government than most Western ones, including the USA, and that white feminists as a group tend to get angry when this is brought up. Getting women of color into the government, not just white women and some men of color, could make some difference, but the way Canada's government looked when this was written (and presumably still looks) along with how the US Federal government looks speaks to racism, sexism, heterosexism, classism, and ableism all keeping people out of government. It makes sense, considering that government perpetuates all of those things.
I definitely understand the "privileged feminists claim their experiences are universal when they aren't" bit from the perspective of being androgyne-identified, biromantic, and Autistic, but I also know that I do not and will not experience it from the perspective of being racialized.

Works Cited (Links are in the titles.)
Carestathis, Anna. "Intersectionality & Feminism." KickAction.ca. N.p., 13 Feb. 2008. Web. 24 May 2013.
Dolak, Kevin. "Mentally Disabled Couple's Legal Battle Ends with New Home." ABC News. ABC News Network, 23 May 2013. Web. 24 May 2013.
Ponniah, Thomas. "Venezuela's New Labour Law: The Best Mother's Day Gift." Rabble.ca. N.p., 13 May 2013. Web. 24 May 2013.

Wednesday, May 29, 2013

Massachusetts State House Hearing Part 3 (H77 and S23)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H77 and S23, except that it gets put up later. This is in four separate posts, the others can/will be found here:
Lydia Brown's written testimony can be found here.

Trigger Warning for mentions of abuse

H77: An Act establishing an integrated confidential data system among state agencies to track dx, treatment, services, and outcome of individuals with autism. (Hi language. And how are we determining outcome? I remember that article where "optimal outcome" meant losing the autistic diagnosis, but attention wasn't paid to other things like depression, OCD, or anxiety. Which is totally not an optimal outcome. Happy and Autistic is a better outcome than spending tons of energy trying to look not autistic, being depressed, and having anxiety issues. This should be obvious.)
1st testimony is from a member of the Autism Commission, notes great difficulty getting hard data. Recent reports are best guesses using extrapolation, reports from other states, federal stats. Says information is critical for planning future expenditures. Employment: Notes that vast majority of students serviced are Autistic, that specialized employment services (like the ones from H75?) for teaching us to handle things like workplace politics and social things and interviews are going to be needed. (Rocket surgery? LOL) He's got testimony on the next bill too.
2nd testimony: Resident, one son has autism. Works with AFAM (something autism Massachusetts.) Apparently autism stuff is housed in 18 different agencies. So data collection is kind of a big deal. Gets numbers for services, both the ones that are problematic and the good ones. Compares the 18 agencies to being like 18 RMVs: It would be a paperwork nightmare, the information should be all in one place.
3rd : 1st from H75 notes that this is in line with priority 6 of the Autism Commission, is talking that we don't know the exact numbers and that we need to know. Coordinated data collection, managing where we are going with services. Worcester person says data lets us actually do a thing and get the things done that heartfelt testimonies from families suggest we need. (Bit worried when I hear heartfelt testimonial by families because that's usually a sign of tragedy talk.)

I suspect that this is actually going to lead to there being 19 agencies instead, because that's how bureaucracy works. But if they could actually do this, it would increase access to both the good services and the abusive ones, so it would be a mixed bag then. Of course, parents who are determined to abuse the autism out of their kids will find a way to be abusive anyways, so increasing access to the good things that are offered could maybe be a bigger deal? I hope so, anyways. 

S23
Testimony from 3rd person on H75, the bill is a bill to provide PCA orientation. She eventually quit because she kept being taken advantage of. One person had her doing weeding for hours and would send her home after she tired, losing hours and therefore pay. She thinks that the overall cost to the state of PCAs would be reduced due to less fraud stuff if orientation were to be a thing.


 

Tuesday, May 28, 2013

To Carly

Trigger Warning: References to a whole lot of forms of ableism and "not like my child."


I want you to know: You're not a beacon of false hope. Anyone who tells you so misunderstands a lot of things, including what "false hope" even means. To be false hope, you would have to be something other than who you have claimed to be- a person who found communication by typing, and having figured it out, was able to show your competence. That's real hope- that others like us really are competent and it just takes more work to find the way we best communicate. Speech isn't always it, even when we are capable of it.
They also suspect that you are an exception. In that you found AAC all by yourself and people helped you with it after you started it, you may be unusual- in many cases, the key point was when someone else presumed our competence and taught us. But even that, I can tell you that you're not alone. My aunt came up with her own AAC as a small child- she carried a Sears catalog, back in the days when those had everything in them, and she would point to words and pictures. She did eventually learn to speak, but the idea that a person could find AAC themselves, or even invent their own? Not as unusual as people often think.
Or that intellectual disability is common and that the hope people see in you ignores that- false again. Intellectual disability may be common, or communication issues may be relevant, or the tests may be designed in ways that do not mesh well with the way we think. (There was a study where we apparently do much better on Raven's than on standard IQ tests, and Raven's is generally seen as the better/more advanced measure, so at least one of the latter two is almost certainly part of the story.) But does it really matter (asked by someone given an IQ of 25)? Competence and intellectual disability aren't mutually exclusive anyways. Intellectual disability doesn't mean "can't make choices about own life" or "can't set own goals" or "can't have relationships with others" or "can't ever communicate." If all they can see from your story is "oh hey, Carly's in college and I don't think my kid can do that so she's not like my child," they are missing most of it. Communication>college.
And maybe, just maybe, they're viewing your life as a source of "inspiration" rather than as a life in its own right. People have a tendency to do that to people with disabilities of all flavors. If all they see you as is a beacon of false hope, they are probably doing that to you. I do not know how to fix that, or even if it is possible to make them understand what they are doing and why it is wrong, but sometimes just knowing that the things people do to you are wrong, why they are wrong, and that you don't deserve it can help.
I won't pretend I agree with you on everything. I won't pretend I like all the people you work with (I have a whole "Problem with Autism Speaks" tag, I don't think pretending is going to work well...) But I will recognize that personal disagreements with you and your choices (not mine, yours) do not mean I somehow think the way you are treated is OK. It's not OK to reduce your life to a beacon of false hope, or use your name as a derisive word for hearing that communication breakthroughs are possible. It's not OK for a grown adult to bully a young woman with a disability for being herself and allowing the world to watch. And it's not your fault that someone did that to you.

Monday, May 27, 2013

Massachusetts State House Hearing Part 2 (H76)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H76, except that it gets put up later. This is in four separate posts, the others can/will be found here:
Lydia Brown's written testimony can be found here.

Trigger Warnings: Abuse, ABA, possible presumptions of incompetence.

H76
An Act to provide equal access to medical treatments essential to children with autism. Member of Autism subcommittee testifies.
Requires coverage for ABA (ew) and AAC devices (yay!) It would allow more children to receive services. This person has a child with autism and said that the diagnosis was hard to hear. (I blame societal ableism for this.) She also notes the number of autistic people who are not speaking (this is what AAC is for) and the tendency to avoid eye contact/engage in repetitive behaviors (um, not actually an issue unless you make it one, so SHUT UP.) Also notes SIBs, which are potentially problematic, but ABA isn't going to fix the root cause.
2nd testimony: ABA program director (EW) is supporting the bill. "Autism and those affected by it."... CAN WE NOT. Really, can we not use that euphemism? Because that's what it is. Talks about all kinds of things that therapists like to help with, helping a person with their first job or learn to shower independently. Not talking about suppressing stimming. I hope they know better than to try, but I doubt it. Also talks about how education is lacking for us, which is an issue. They think ABA is a form of "good" education for us, I disagree. By the time they've changed it enough to be not directly abusive, I'm not sure they can really even call it ABA anymore. They have to call it that, though, because insurance. Which is an issue that also needs fixing.
3rd testimony: I think it's the first person from H75 again. Wanting to get the EI coverage to carry through so that people can get helped. It's apparently a bipartisan bill. Talking about how this affects everybody. This is apparently also a high priority thing for the ARC, will need to look up who all they are. Notes again that 50% of us are nonverbal or have very limited speech, wants to have iPads and other AAC devices covered. (I'm not sure I believe the 50%... maybe just kids at/below a certain age, because I do know speech delay is a thing?)
4th testimony: Everyone's saying how great ABA is, how effective it is except for Autistic adults, who are all "This gave me PTSD, stop it." But no one listens to us... and this person isn't bringing up our issues with it at all. Heck, even Carly Fleishmann has brought up some issues, says it might be the cause of her OCD, but no, this person doesn't bring that up at all because ABS is apparently wonderful. early intervention can apparently mean huge savings over the course of a lifetime- savings over what alternative, might I ask? It's not like I've seen much in the way of education for Autistic people that is actually good. Oh, good, she's talking about the communication thing. Notes that all the behaviors get worse when communication isn't possible, which is a bit of a "well, duh" but needs stating and is a better point to hit than how "awesome" ABA is. Because trying to ABA away a behavior that is trying to communicate a thing? Really not OK.
5th testimony: Therapist, director of something. Finds that demands for services increases with these sorts of things because awareness is increased and people figure out that this would be useful. I'm not entirely sure what the aim of that point was. Maybe so that the government knows that there is a big demand even without everyone knowing it's a thing that exists, so it's important due to high demand that's just going to increase.

I'm not entirely sure how I feel about this bill. ABA being the thing that is covered really squicks me, but I want an iPad or other AAC device in the hands of every autistic person who can use them. I guess it's going to come down to "if parents and service providers make good choices, this can be very good, and if they make bad choices/presume that lack of speech means incompetence, this will be very bad." That's about the current status quo, though. Meh. I know it's super important, though, because of the AAC thing and that it covers non-dedicated devices (things like tablets that can be used for more than just AAC.) So I want it passed because of that bit. I just don't trust anything with ABA as a big thing. Which means I never trust the government agencies related to autism. Ever.



Sunday, May 26, 2013

Massachusetts State House Hearing Part 1 (H75)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H75, except that it gets put up later. This is in four separate posts, the others can/will be found here:
H76
Lydia Brown's written testimony can be found here.


 Bill H75
Establishing a 2 year pilot program for adults with Aspergers and autism, providing services with the goal of paid employment, would establish a committee to figure out how best to support us in reaching employment. It would take 25 students on the pilot program. Many Autistic people have difficulty finding and keeping a job. Aims to help Mass Rehab in their helping people with employment. Still working on cost estimate. 1st testimonial is by a person who was on the legislature and sponsored the bill initially. She has a 23 year old son who is autistic.
2nd testimony: Community college is creating programs to help those of us who are aging out, getting us into jobs. Which is important, since this is one of the things we have trouble with. These college programs are getting their autistic students hired at 80%+ employment, which is much better than the employment rate for Autistic people in general. (That is estimated typically to be in the 20-25% range for full employment, if I recall.)
3rd testimony: 29 year old with a masters degree, has Aspergers, Mass Rehab says she interviews fine, but she has never had a full time job. She notes that most people see her as just weird, even with her disability documented. Workplace politics is one of the things she has trouble with, and would need help with. She feels that she would be able to be a taxpayer quickly if she got a job, and finds that the current Mass Rehab services are not sufficient for getting her into the workforce. (If she becomes a taxpayer, and so do the others in the program, it pays for itself long-term. Which is good for the whole budget thing.)
Question about metrics, how to measure success. The bill will not set the metrics, will leave that to Mass Rehab and the program itself. They want to help find meaningful employment at the level of education we have. Multiple advanced degrees does not need a $10/hr job, needs a job that will pay enough to take care of student loans and should be using the skills relevant to the advanced degree.
Note about making sure there is a control group to prove that the pilot program really does help. Since the pilot program is only meant for 25 people, getting an extra 25 who will just be tracked during those 2 years is probably doable- maybe do it in exchange for "if it turns out this thing helps at all, you get in next" and maybe a small stipend?
Personally, I think this bill is important. I don't know if their pilot program is going to be as good as the
community college one the 2nd person was talking about, because I suspect Mass Rehab doesn't have the same level of understanding of what is needed in the portions of the workforce that aren't stuff considered appropriate for people with intellectual disability, but maybe I'll be pleasantly surprised. This one is going to be designed for autistic people with education who are looking at more complicated and higher-paying jobs, as far as I can tell, so maybe they will figure it out and it will improve with time. This is one I really do want to see.

Saturday, May 25, 2013

Experimental Design

I'm taking a psychology class online. We had to do an experimental design, I did mine at the last minute and this is it. 

The experiment I am designing is a variation of the conformity experiment testing to see if autistic adults are less likely, more likely, or approximately equally likely to conform their answers to match those of peers rather than trusting their own abilities. The independent variable is if the subject is on the autism spectrum or not (language note: There is not one agreed-upon term for autistic people, with preferences including person with autism, person with Aspergers, person with ASD, Aspie, Aspergian, Autie, A/autistic person, on the spectrum, and in some cases, Autistic as a noun. Autistic person will be used here.) The dependent variables will be likelihood of conforming to the incorrect answer 1) at least once over the course of the experiment and 2) on any given trial, with the groups divided into typical and autistic subjects.
The subject would be given a test alongside other "subjects," who are actually part of the experiment. The test would involve being given one line segment and a set of four line segments, one of which is the same length as the single segment. The subject would be asked to write their answer down prior to hearing the answers given by the fellow "subjects" so that it can be determined if the subject had the initial correct answer or not, after which the other subjects would begin to give their answer verbally. After this, the subject is asked to provide their answer, also verbally (this experiment excludes non-speaking autistic people due to this design constraint. A method allowing the person to type their answer in on an AAC device or choose a communication card to hand to the experimenter after hearing the other "subjects" answer may be usable, but it is uncertain and this will not be included in this experimental design.) Both initially written answers and verbal answers given to the room at large are recorded.
An initial incorrect answer with second answer correct and in alignment with the room, an initial incorrect answer with second answer differently incorrect in alignment with the room, and an initial correct answer with second answer incorrect in alignment with the room will all be recorded as conforming, unchanged answers where both are in alignment with the room (initially incorrect and second answer is the same incorrect answer in alignment in the room and correct answers for both when the other "subjects" give correct answers) and changed answers where both the initial and final answers are different from the room are neither conforming nor nonconforming, and any case not already covered where the final answer is different from that of the room is considered nonconforming.
This experiment would determine if autistic people are more, less, or equally likely to conform as typical peers, with it being necessary to match subjects so that gender and age do not affect the results. The experiment would not determine the reason for any differences which may (or may not) be found, only if there is such a difference.

This experiment design was inspired by the Asch conformity experiment and by the recent study "Children with autism do not overimitate" found in Current Biology and reported in Science Daily.

Friday, May 24, 2013

Some Stuff I Wrote Elsewhere (but you can't find those elsewheres)

 I write stuff besides just things that are originally for the blog. Some of them I think belong here too. So here's a thing. Two things, actually. A Women's Studies thing and an abstract I'm submitting to maybe get into another book.

For Women's Studies, my introduction that I stuck on the forum:
My name is Alyssa and I am a triple major in Mechanical Enginering, Mathematics, and Chinese. I'm entering my fourth year in the International Engineering Program, which means I'm about to have my year abroad. I have some idea about Gender/Women's Studies from independent stuff, but have never taken a relevant formal course before. My main sociology type interest is actually in Disability Studies, specifically in the (fairly new) neurodiversity movement, but it isn't possible to fully understand any one dynamic without some understanding of how it interacts with other things, like race, class, gender, and sexuality. From this class, I'm hoping to gain a general understanding of feminism and women's studies to use as a basis for looking more closely at the intersection of disability and gender. My main female inspiration is Tamora Pierce, who wrote the Song of the Lioness series along with quite a few other books. Those books were my introduction into the fantasy genre and all have female protagonists, which has been a big factor in my understanding that yes, representation of women in fiction really can show many ways of being a woman without resorting to stereotypes. In a way, she was my introduction to feminism as a thing people talked about and had to fight for (instead of something that came from a sense of fairness and that I thought everyone just knew) as well as my introduction to the fantasy genre.
And for FYeahTortall (heads up that they swear,) they are working on putting together a book, and this is the abstract I sent in:
A Neurodiversity Perspective on the Representation of Mental Differences in Tamora Pierce Novels

Within the Tamora Pierce novels, there are characters who clearly have mental differences, such as PTSD in the case of Briar and Rosethorn following the war in Yanjing, brain injury/damage due to oxygen deprivation after Rosethorn was briefly dead, and Zhegorz having something (probably a mix of things including PTSD) resulting from abuse and mistreatment he received from those whose secrets he unintentionally heard, along with possible ADHD in Jory Bancanor. There are also forms of magic in both the Tortall and Emelan universes which could likely be best examined as neurological differences, such as the Sight (George and Aly Cooper) and the innate ability to hear voices/see images on the wind (Zhegorz, Tris, references to many initiates,) given that these are differences in sensory perception. In this essay, the portrayals of all of these differences, along with any others I find in a re-reading of all of her novels, will be examined from a neurodiversity perspective. Both the ways the characters are shown to the audience and the ways that other characters are shown to react will be examined, studying both our own society and those within the universes created by Tamora Pierce.

Thursday, May 23, 2013

Accommodating Ourselves

Another one for Autism NOW, I actually wrote it a while ago. I haven't had language thoughts between then and now this time, though, I think it's mostly fine. 

One of the skills I have found most valuable is being able to accommodate myself in most environments. See, there is an unfortunate tendency to discriminate against people with all sorts of disabilities, regardless of what the ADA might say. However, when I can make the needed changes myself without having to explain that I'm autistic, no one really cares. It's usually OK to be "just weird."
So these are some things I have come up with that we can sometimes do to accommodate ourselves, often without needing to bring up the fact that we are autistic.
  • Noise-canceling headphones are growing more accepted in office environments. Get a good pair and carry them with you everywhere! When it gets too loud, bring them out!
  • Also carry some earplugs if you can wear them. There are plenty of earplugs that just take everything down ~10dB, which can make the difference between an acceptable level of noise and being overloaded. This is what I do at some concerts, since I like live music, but the volume is usually too high. This can be done anywhere that visible noise-cancellation would be a problem, but the volume needs reducing.
  • Always have a ready excuse to leave social events early. Events can lead to overload, but if you have a reason that you need to leave early, you can get out and decompress.
  • Know where the quiet areas are in any building that you spend significant time in. You can usually manage to get away for a few minutes without attracting notice, and that time to decompress can make a huge difference.
  • Carry a stim toy that you can play with discretely. Stimming in public might not be socially accepted yet, but they can't yell at you for what they can't see!
  • Also bring a favorite stim toy, even if it's not discrete. As long as it's in your bag, you can bring it when you go to that quiet area that you found. Or you can spin/flap/rock there. Whatever you need to do, find somewhere that you can.
  • If losing speech happens, get a text-to-speech program for your computer. Lie about the reason if you have to ("After that time when I lost my voice on the day of my big presentation, I've made sure I always have a computer with text-to-speech and my whole presentation typed out, just in case!" might be a decent one.) Then bring that computer with you everywhere.
  • If phones are a problem, don't give out the number/tell people to text you. Nowadays, if you say text, most people will. And of course, if it's outside work hours, you can happen to have stepped away from the phone.
  • Especially for bigger presentations: If it's causing sensory overload, leave. Presenters mostly won't notice, and attendance, if taken, is usually taken early on.
  • If possible, find work that won't cause overload. It's much easier to accommodate yourself in a situation that isn't going to cause major problems anyways.
  • College: Don't be afraid to drop a class if the teacher has a problem with this. With the exception of small schools, there are very few classes that the same teacher always gets, and if you need to wait until someone else teaches it, that's what you do.
  • Sometimes there will be one person there who you feel comfortable telling. If there is one, tell them, and that person can often make small accommodations in meeting design and activities for anything they are running and provide excuses for you to leave early/arrive late at things that are going to be problematic for you. This does require finding someone trustworthy, though.
It is, of course, easier to get full accommodation when you are open about your disability, but there are some things you can still do while passing for merely odd.

Wednesday, May 22, 2013

Chinese Neurodiversity Paper "In Progress"

It's not the paper I really wanted to write, and so I only got to bits of it, mostly the ones closer to what I wanted to write. I'm not really finishing it. I'm really tabling it until after I finish my paper on the erasure of Queer Autistic people, by which time I will probably be in China. Then I will grab what I can from this to use in the paper I actually want to write.

Trigger Warnings for suicide and abuse if you read Chinese.
下面的文章谈到自杀。


神经多样性

神经多样性是什么?这个问题没有简单的回答;神经多样性是看神经异常的模仿,也是文化的运动。在神经多样性的模式中,神经异常是一个应该被尊重的独特个性,不是一个人们尝试治疗的障碍(Nciku,)。这个想法是自闭症的成人提出的,后来有别的神经分岔的(neurodivergent)人也用神经多样性看他们自己的差异,也有一些老师和父母用这个模式(介绍神经多样性,)。现在,提议神经多样性的人大多也是提议自闭症权利的人,提议自闭症接纳的人,或提议残疾人权利的人。上面是因为神经多样性的模式是从残疾人权利的说法里开始的,特别是从盲人和耳聋的人的说法里开始的。在下面,作者将会讨论自闭症的人的生存状况和残疾人权利及这两件事情跟自闭症的人权利的关系。最后,作者会讨论以上几点跟神经多样性的关系。

介绍自闭症

自闭症是一种发育障碍。如果一个人患有自闭症,那么三岁以前能看到自闭症的症状(现在,有一些医生能诊断十八个月大的小孩!)因为很多人不太清楚自闭症是什么,所以还有很多自闭症的人不知道自己是自闭的。
自闭症主要有三种障碍:在社交,在沟通,在灵活思维上都有障碍。每一个自闭症的人在这三个方面都有自己具体的问题。例如,很多自闭症的人三岁后才开始说话,或者长大后也不能说。另外一些自闭症的人有时候能说,有时候只能打字,甚至有什么时候都能说话的自闭症的人。除了说话的问题以外,别的沟通问题常常包括明白笑话与讽刺的问题。社交问题包括因为不明白别人,所以不能跟别人讲话。因为社交很难,所以让自闭症的人很累,不太愿意社交,及看不懂表情和身体语言。在灵活思维的方面,自自闭症的孩子闭症的人常对一个题目非常感兴趣,可能对别的什么都不感兴趣。有时候,自闭症的人在这个题目上的知识能跟专家一样深。每天要吃一样的菜,做一样的事情也是自闭症的人从僵化思维来的特征。

自闭症的人生存状况,社会对自闭症的看法

如果要谈自闭症的人生存状况,那么也要谈诊断的情况。在美国,医生大多知道自闭症,父母也知道自闭症。自闭症专家很多。如果孩子的发育有什么不正常,父母很快把孩子带去看医生。如果医生认为可能是自闭症,他告诉父母要带孩子去看专家。诊断会很慢,但是因为很早开始,所以孩子很小的时候已经知道他是自闭的。现在,18个月大的小孩就能被诊断。
中国诊断自闭症的情况完全不一样。很多父母相信晚一点说的小孩后来是很聪明的人,不知道这是自闭症的特点。因为不知道自闭症,父母也不知道孩子别的自闭行为真的是自闭症的特点。而且,只能生一个孩子,一方面让父母没有自己的孩子或兄弟姐妹的孩子比较,另一方面让残疾孩子更难被父母的接纳。因此,父母往往不带孩子去看医生或者等到很晚才带孩子去。WE EDITED TO HERE
自闭症的孩子看医生也不一定被诊断,知道自闭症的医生比较少,专家更少。这是因为医生往往没有修过心理课,只能从别的知道自闭症的医生那里学习自闭症到底是什么。如果没有父母带他们自闭的孩子去医院看医生,那么医生就根本不知道自闭症的存在。如果没有懂得自闭症的医生,看医生没用,孩子不能被诊断。
还有很多医生说孩子“有自闭症的症状,”或“跟自闭症有一点类似”,不说孩子是自闭的。这样的情况是从几方面来的。
第一,自闭症是精神残疾,跟所有精神残疾一样受到偏见。医生可能因为不愿意让孩子受到这样的偏见,所以不愿意给自闭症的诊断,又可能相信孩子的障碍没有真正的自闭症那么严重。
第二,知道自闭症的医生比较少。不知道自闭症的医生又不能诊断自闭症。
第三,Aspergers自闭症是不常诊断的。很多医生不知道能说话的人也可能是自闭的。
第四,在中国,自闭症的评价只有半个小时。对神经典型(neurotypical)的医生来说,半个小时不够确定孩子是不是自闭的。(有一些自闭症的人能几分钟以内就确定,而神经典型人不能。)
诊断后,自闭症的人都面临很大的问题。
中美两国人对自闭症的了解完全不一样。美国人常不清楚自闭症是什么,但是听说过。在路上问的中国人大概没听说过自闭症。美国老师都知道自闭症,医生都知道。他们可能不太清楚自闭症的人是什么样人,最好怎么帮助自闭症的人,而他们知道自闭症的人有几个障碍。中国老师却常以为自闭症的孩子只是胡作非为。
虽然中美两国对自闭症的了解有很大的差别,但是两国自闭症的人有很多一样的问题。例如,教育是自闭症的人常面对的问题。在美国,老师都知道自闭症是什么,而不一定知道怎么最好帮助自闭症的孩子。自闭症的孩子的个别化教育计划常有问题:比如老师以为让自闭症的孩子学好“固定手势”是对他们好。再比如当别的孩子上学术课程时,自闭症的孩子却被迫去上社交课程。这样自闭症的孩子渐渐地在学术课程就落后了。进而,自闭症的孩子被认为什么都学不会,所以不被允许上学术课程。还有,一些不会说话的自闭症的人不得不用一些交流替代品,比如电脑语音软件或iPad进行交流。有些老师因为不理解,所以没有教会自闭症的人怎么使用这些替代品。还有一些老师甚至禁止他们使用。
在教育问题上,美国的自闭症的孩子大多上学,问题就是在什么学校上学,老师让他们学什么内容。(这就是Henry的问题。他想跟别的14岁的学生一起读书,学一样的内容。学校认定因为他不能说话,只能打字,所以不行。半年后学校才愿意让他上学,这个月开始跟他朋友一起上课。)-EXPLAIN THE STORY. Who is he? Why do we care?

在中国,公立学校平常不愿意接纳自闭的学生,所以父母送孩子去上残疾人的学校或不送他上学。中国的"随班就读"不是强制性的,不够提供自闭症的孩子和重度残疾儿的教育。因为中国医生所知道的自闭症是儿童自闭症,所以高功能自闭症的孩子不被诊断。没有诊断让这些自闭症的人没有特别的帮助,但是没有自闭症的诊断让学校容易接纳他们。没有诊断的自闭症的人大概有好一点儿的生存状况。如果没有诊断,别人会认为只是胡作非为,也会认为很奇怪。如果有诊断,不好的事情可能真的会发生。2012年,媒体报道了两次其它学生父母对学校说如果学校让自闭症的孩子继续上学,他们就“不客气了。”第一次在深圳的某中学:学校就不让自闭症的孩子上学。学校不让他上学,他就偷偷地进去。然后,学校把他的桌子拿走,他就站在教室后面听课。最后,学校终于把他拒之门外。几天后,他自杀了。


固定手势="quiet hands"

Tuesday, May 21, 2013

A boat! A boat!

My dad has a boat. He got it from a relative getting rid of theirs. He put it in the water today, and it was great. Because I got to ride in the boat down to the landing (it's about a mile, I never got to do that before it was so cool!) and then I was in the boat as they put it in the water, and then we got to take a boat ride. Which was made of win. I like boats.  I like the wind on my face, and the smell of the salt air, and the rocking of the boat on the water. It's great.
(In order to be on the boat for the first ride of the year, Dad's rule is that you have to know basic water survival and be a good swimmer. I am probably the strongest swimmer in the family, seeing as I can and have swum three miles without stopping. I can also swim the length of a pool (25 yard pool) without needing to breathe using butterfly, front crawl, or breaststroke. I've never tried to do so backstroke because that would be kind of pointless.) )
It was also time alone with my dad. He has some trouble with the whole "Alyssa is Autistic" thing, but not with any of the actual traits that I have. I dunno, it's weird. But we talked about life in general, and it was mostly good. He gets that I am not "normal" and never will be. He gets that this doesn't bother me. I don't think he gets how badly I would fail if I tried to be normal, but I don't think it's that huge a deal because I don't plan to try. I plan to keep being my own weird, Autistic self.
I played catch with my sister. I made pasta for dinner to share with both my sisters. It was pretty good.
Oh, and I'm fairly sure my left little toenail is about to fall off, after all this time. I injured it over spring break, about two months ago, and it's currently hanging on by a thread. Whoops. I have skills. And by skills, I mean the ability to stub my little toe hard enough to draw blood and eventually lose the nail. Blech.

Monday, May 20, 2013

I think I'm back

Normally, I write really regularly. That didn't happen this past week. I think stuff surrounding my graduation is to blame. Because seriously, I was trying to wrap up my research in nanotechnology (successfully wrapped up, though I will probably get emails due to people not being able to read my handwriting and wanting to know what things are,) move out of the dorm, graduate, and do paperwork for going to China in the fall. This past week, I did enough stuff that even without "Alyssa has some executive functioning issues" to worry about, it would have been a very full week. As it, I'm exhausted. But it's all good, I get vacation now. I like vacation.
So, as for nanotech: I took SEM pictures of my samples, it looks like I have gotten the thing to happen that I wanted to happen. I don't think I can really say more than "I took pictures and my thing worked" because I'm fairly sure the university owns the research, not me, but I can tell you that. I also had to get some help preparing my samples, because, no, we are not going to have a dyspraxic Autistic adult trying to pour from a two gallon jug of concentrated hydrofluoric acid. That is just a recipe for badness. We will have someone who is not dyspraxic and doesn't have any other kind of motor issue either do that. Hydrofluoric acid is nasty.
Moving out of the dorm I needed help with because cognitively figuring out what I need to do in order to move out is hard for me. This is where "Oh, crud, what is executive functioning?" comes in. So my mom helped me a lot with that. And it got done. Which is good.
Graduation was yesterday. I already had my degree (the math one, I've been a graduate student in one of those three majors since January,) but actually getting to walk across the stage was cool. And I had a pile of family there. And then I went home with my dad, stepmom, and siblings. (My parents divorced when I was really, really little. I have a couple memories from pre-divorce, but they aren't ones where the pre-divorce status is relevant. It's stuff like climbing in and out of my crib.)
So now I'm at my dad's and I'm done with all my school stuff. This might be the first summer I really have off in a long time. I think the summer between my sophomore and junior years of high school was the last one where I was really off, since I went to China for the three after that and then I was at school doing research all last summer.
And I'm getting ready to go to China, for a year this time. It's exciting.
Oh, and the "security" at graduation was exactly the security theater I knew it was going to be. I don't think the people doing the checks even realized I had a backpack. It was just a PR move because they figured people would be afraid. (Think fear, we do?)

Thursday, May 16, 2013

Neurodiversity as part of Diversity Week

I had a meeting today with the director of my university's Multicultural Center. It was tiring. It was good. Good things happened.
I'm pretty optimistic about the administration giving the Neurodiversity Committee the funding it asked for, since it wasn't all that much, and of ten or so committees that asked for stuff after the 20,000 Voices Open Space Conference and the follow-up, our requests were the smallest. (Order of magnitude less than what the most expensive group asked for, at least. Not even joking, there were people asking for a full-time staff person.) And even if we don't get anything directly from administration? The head of the multicultural center expressed a commitment to doing one of the things we wanted (making neurodiversity part of diversity week) on his own, basically as a "the head of the multicultural center can do that" thing.
For the 2013 one this fall, they will have to run it pretty much without me, since I'll be in China, but they know they have my email and that I am pretty good about answering stuff, and that I am more than willing to. They know some of the stuff I was thinking about too...
Like, as far as "why is this important?" I mentioned that understanding other cultures is a good thing and that Autistic culture is a thing. I also talked about how being ready for more Autistic people who know they are autistic and for some who don't speak (remember, more and more Autistic people with significant support needs and/or who don't speak are in mainstream classes doing the same work and will be qualified for college if they want it) before they come (as much as possible, anyways, it's already started) is important. It's similar to building the ramp before the wheelchair user gets there, in a way- make it already accessible so that the person who needs it doesn't have to navigate an inaccessible system in order to get access.
For the 2014 Diversity Week, I'll be more directly involved since I will be back on campus and that makes a big difference for my ability to affect and participate in things that happen on campus.
So yeah. Long story short, my college is going to be getting more neurodiversity-friendly and that's got to be a good thing.

Wednesday, May 15, 2013

Saving My Sensory Hide

I wrote this. It was originally a guest post on Lost and Tired. (The intro suggested it was a bit more specifically aimed at parents than it is, it's really aimed at "anyone who can make any of these things happen" and I was imagining writing to an Autistic adult who had always been told to act less autistic rather than helped to navigate a world not designed for us, possibly with Autistic kids when I did it. I get why, though- parents are his target audience. Picture at the bottom isn't mine either, I think it's a standard stock one.)
I know he and I haven't got the same set of readers (that's why I did the guest post, I'd bet most of my usual readers have seen at least some of these before and his mostly hadn't) but now I'm making sure that my folks have a shot at seeing it too.

Clothing:

  1. Certain fabrics can be problems. Which ones will vary from person to person, but don't try to make someone wear a fabric that is a sensory issue. Finding different clothes is worth it. Learning how to make them yourself and then doing so is worth it if it comes to that.
  2. Tight clothing may be a problem. If so, do not force your kid to wear stockings, leggings, or other tight clothing. Comfort is a prerequisite to being able to function, and it's still more important than looks.
  3. Footwear can also be interesting. Many people do best with crocs, some with sandals, some barefoot. Try different things if shoes are a problem.
  4. Some people just can't wear socks. If this is you or your kid, choose shoes accordingly so that you don't get blisters.
  5. Short of legal regulations such as requiring shirt and shoes to be served and the issue of indecent exposure, all dress codes can be modified for disability. It's no different from the person who has a doctors note saying that they have to wear sneakers instead of dress shoes.
  6. Puberty doesn't make SPD go away. Whatever the requirements for clothing may have been, expect it to continue, and expect either the same requirements or stricter ones to apply to any new undergarments.


Hygiene:

  1. Mint is actually a pretty common issue. It's a strong sensation, and people either love it or hate it, and a lot of people with SPD fall into the "hate it" camp. Toothpastes that are not mint flavored may be harder to find, but if mint is an issue, this is more than worth the time. Flosses that are not minty may also be a good idea. If this is an issue, be prepared to argue with the dentist about it, because they will have trouble with this one, especially with older Autistic people.
  2. Try all different kinds of toothbrushes. Electric ones are actually worse than manual ones for me, something about the vibration. 
  3. If brushing hair is an issue, get a haircut. Comfort is more important than looks, and anyone who tells you different is to be laughed out the door.
  4. Unscented soaps and deodorants are your friend.


Food:

  1. Bring snacks with you, so you can still eat even if all the food you are provided with is a sensory issue.
  2. Mint again: If this is an issue, smell chocolates and other offered desert items before biting. People won’t always tell you that these contain mint because it doesn't register as an important thing to tell people.
  3. Carbonated beverages can be painful. If they are for you or for your kid, bring something you can drink. You have no idea how many times I have gone to social events only to find that every beverage they offer is carbonated, and I can't drink them. Even shaking and stirring to try to make them go "flat" isn't enough.
  4. Similarly, don’t tell someone that “flat” sodas are OK if carbonation is an issue. They aren't.
  5. If water is OK (some people can’t swallow tasteless things,) don’t be afraid to ask for an empty cup and find a sink or water fountain. You don’t even need to disclose a disability for that.
  6. There may be a lot of healthy foods that you or your child can’t eat. That’s OK, find the ones you can eat. Yogurt, puddings, and scrambled eggs are all problems for me because of the texture, and re-fried beans aren't great either. But there are other things I can eat. And I concentrate on those instead. Worst case, you need some supplements.
  7. As far as the focusing on things you or your child can eat goes: If you don’t have a medical reason that you need to avoid gluten, casein, or any other specific group of foods, don’t try. It’s just going to reduce further the space of things you can eat, and then you will be sad. If you have a medical reason, you obviously need to do it, just be aware and allow extra time for finding things you or your kid can eat.
  8. This might lead to eating foods at “strange” or “inappropriate” times. It might also lead to some “strange” snacks. Just go with it. I can’t remember the last time I ate a “typical” breakfast, and I’m fine. It’s just a result of sensory issues.
  9. A “try one bite, and if it’s that bad you can spit it out” rule for trying new foods is about the most you can realistically try for with Autistic people, and demanding re-tries of bad foods is not a good idea. If the scent alone is a sensory issue, don’t even push for the bite. It’s not worth it.


Other At Home:

  1. People talk about “brushing” as an occupational therapy thing. If you or your kid are or may be seeking for that, go ahead and try it, but if it is uncomfortable, stop immediately. That one specifically is often painful.
  2. When people are in sensory overload, they often stim more. Don’t quiet hands them (never quiet hands anyone!) look for what is causing the overload. While some stimming is fun, stimming that is induced by sensory overload is a coping mechanism to avoid insta-meltdown, and it is often just a delaying tactic.
  3. Having a sensory room in the house that has a bunch of things with good textures, is at a good level of light (probably adjustable,) is quiet, and has enough space for things like rocking or spinning is a good idea. Exactly what goes in it will depend on specific sensory needs. Even if it is just a corner of a room with a curtain around it, this is hugely useful.
  4. Also, if there are multiple people in the household with different sensory needs, they might need separate rooms for this. Plan like every person in the household will all need their sensory space at the same time, and then you’ll be OK even if that happens.
  5. Taking a break to calm down and recover after sensory overload is better than pushing it and a meltdown.


Other School/Work/Going Out:

  1. Sometimes knowing that a sensation that triggers sensory issues is coming ahead of time can help. If so, having "gets advanced notice of fire drills" or "is seated facing the clock" as accommodations can help.
  2. Strobe lights can be extremely disorienting, even for those of us who are not officially considered photosensitive. It's not the same level of dangerous for us as for a person with photosensitive epilepsy unless we actually have photosensitive epilepsy, but it's still good to avoid. Turn flash off if this is an issue.
  3. Carry a stim toy, always. By stim toy I mean something you can use to get a sensation for which you are sensory seeking. Maybe carry multiple. Certainly have one that can be used discretely.
  4. Noise-cancelling headphones are your friend.
  5. Distracting yourself or your kid with a cell-phone, iPad, whatever kind of electronic game ASAP when entering a potentially overloading environment can be a lifesaver. If this is what’s going on, don’t take the device away.
  6. Even when you're out, still don't stop a person from using their "sensory overload coping" stims. No matter how embarrassing you think they are, a those plus a meltdown is even more embarrassing for you and your kid, plus painful for your kid. Exiting the situation is a better choice.
Many of the tips in this post were adapted from these prior posts of mine:
Sensory Processing Disorder-Autism Parenting (I reviewed their article of the same title and added my own tips.)


Tuesday, May 14, 2013

Inclusion... this is not

Trigger Warning: Ableism

Heard about the backlash that Albert Einstein High School is facing for a letter the principal sent? It was actually so bad that he was ordered to take it down from the website. But the offense that I'm hearing about in the video I just linked? Not about the problems I really have with it. Kerima of The Autism Wars says about it:
A Montgomery County High School principal shows his ableism and hate of Autistic students by admitting in writing to parents that the special needs students attending his school this fall that are supposed to be in an inclusive program will be "safely segregated from their children in locked classrooms". He has since been ordered to take the notice off the schools website, but who would like to join me in emailing this sorry excuse for a human being and telling him he has just admitted to illegally restricting the special needs students school environment and committed IEP fraud as well? ...
 And the principal? "... and I do heartily apologize, if, in fact, they interpreted it that way." Yes, this is a classic nonpology, blaming it on how people interpreted his words literally, I suppose? Which is kind of what you're supposed to do? The text of the letter he was forced to take down did say they would be essentially self-contained, so he can't be calling it inclusion. Same building isn't inclusion, time spent with abled peers is.
He also wrote a letter "apologizing," which is also a nonpology. You can read it here.
You can also read the original letter that was removed from the website here, along with a superintendent response.
Now, here's some stuff that's wrong with the initial letter:
  • Self-contained except for gym, which is a class exclusive to Extensions students is still basically self-contained, they're never actually in a classroom or lunchroom with abled peers. Ever. Talk about failing at "least restrictive environment."
  • They talk about how the students not in the program will be safe from students in the program, but nothing about how they're going to keep Extensions students safe from the mainstream students. Guess which way the risk actually goes? Yeah, the disabled students are disproportionately victims of violence and bullying, this is pretty backwards here.
  • "Concerns" is, as usual, code for "We're scared of people with disabilities." Aggression, yes, it's a thing, but not everyone is the program because of aggression, and the way IEPs are done, the "hits you on the way out the door if you try to stand in the way" often still counts as aggression because letting an overloaded kid out is apparently not a thing. (Shockingly enough, in such cases, adding "if the kid wants to leave due to overload, they can" and following it makes this sort of aggression "magically" vanish, when the actual change was some autonomy, which isn't a standard behavioral intervention.) Sometimes there actually is an aggression issue, but that doesn't mean wholesale self-containing the entire program is warranted (it's not) or legal (also not.) 
And the "everyone is offended" response is missing the whole part about violating laws about the rights of students with disabilities, including autistic students. The "least restrictive environment" line is a big one. If locked classrooms is a thing that actually happens, fire codes may well be another thing. You can require a key to get into a room, but making a room lock from the outside is a fire safety issue, cars and jails are pretty much the only things where you can do it and cars are because they can go 60+ miles an hour and opening a door moving that fast is a really bad idea. It also takes a special setting to do that on a car and not all doors can do that. A classroom? Not OK. What if something happens to the teacher? It's similar to the reasons that locking a kid in a room isn't OK just in general.
We're not just talking about offense, here. We're talking about people breaking the law and needing to be called on it, and not even getting that that's the problem. They think it's offense, too.

Monday, May 13, 2013

No, Really. Communication Is IMPORTANT.

Trigger Warning: Reference to Quiet Hands and other abuse, presumptions of incompetence

I am having a rant. Professionals have this thing where for whatever reason, AAC isn't on the radar, and apparently sign language isn't on the radar either. It's why Carly Fleishmann's intelligence surprised people, I think, even though it's not shocking at all that a person can think. Or you'll hear people actually say that a kid can't learn sign language because they are autistic. It doesn't work like that, sign language is actually one of the things they use as an alternative to speech for autistic people. Neurodivergent K uses it after seizures until speech works again. My mother used it with me when I was really little and not talking much yet, but I talked pretty early and unfortunately don't remember much of it. Evie knew some signs, though maybe seizures messed with that because seizures can mess with pretty much everything. Maybe she went into a longer-term shutdown of a sort due to higher demands. Maybe some of both. But she is autistic, and she was able to learn them.
As a part time AAC user (yeah, I'm not always capable of oral speech, the things you can't tell from the fact that I blog include speaking status,) this is really important to me specifically, and as an Autistic person who supports the rights of everyone, this is also really important to me. As far as I'm concerned, communication (not necessarily oral speech, it's not going to consistently work for everyone and there are people it will never work for at all and that's OK) needs to be priority number ONE once food, water, and shelter are taken care of. This is not an exaggeration. Yes, it comes before stopping S.I.B. (Self Injurious Behaviors) in my book, because there is always a reason for those and if a person can tell you why they are hurting themself that's going to be pretty useful. If they can tell you about the problem before they start hurting themself, that's even better, especially if you listen and fix it, which you should. (Remember, everybody communicates. Not everyone does it in ways that are easy for you to understand, but everyone communicates.)
Now, why do I think it's so important? Well, like I already said, if a person can tell you about a problem explicitly, you can fix it. That's a big thing. When a person isn't being taken care of properly, is maybe being abused? (That happens a lot, often by teachers and caretakers.) Communication means they can tell people about it, maybe even get it fixed. People are more hesitant to abuse someone who is capable of and willing to report them. It still happens, unfortunately, because ableism is rampant in our society, but it's marginally safer and much easier to fight. Communication opens up self-advocacy and plain old activism both. Communication that other people understand makes it even easier. Communication means the person can tell you what their goals are, which means that working on the things they want to be able to do is now a thing. Self-determination, autonomy, eventually perhaps independence? All the stuff parents talk about wanting for their kids is a lot easier (or just plain old requires) some form of communication that others can understand, so it has to come first.
Acting less autistic? Only going to ever be useful if the person is trying to pass for neurotypical, which isn't even possible without oral speech. Quiet hands? Abusive, straight up. Forcing eye contact? Also abusive, also shown to hurt listening ability. Same with same? I guess it's maybe useful for pattern recognition and such, but it's a lot easier to figure out if the person understands if they can tell you. Which means you can move to the next thing faster. Which means education is a thing- real education, not the "We're going to teach you the same thing 200 times because why not?" that a lot of therapy seems to look like.
And yet people don't think of it. They are often shocked to discover that we can communicate. I don't get it. There are actual studies showing that AAC is a thing that works, that sign language is a thing that works, that autistic people who have some sort of AAC/sign are more likely to start using oral speech and do so sooner. This knowledge is out there. And no one thinks to use it. Are they that determined to believe us incompetent?

Saturday, May 11, 2013

Reflections on... Hexagons

A friend suggested I try a new thing. All of my Because Patterns designs are based on squares for their symmetry are mostly square in shape (I've got a couple that are rectangles, but mostly it's squares... or infinite tessellations where the repeating bit is a square.)
And then we watched a video about hexaflexagons. And the person decorated her hexaflexagons, so my friend, awesome (and ausome!) as he is, suggested that I make a hexagonal pattern. 
Which means triangle paper.
Well, triangle dot paper.
Equilateral triangle dot paper. Which you can never make perfect because sqrt(3)/2 is irrational and printers work with whole numbers of pixels, but that's OK because we can get as close as we want, right?
Right.
But if we get too close, the ratios are huge and the best resolution the printer can get isn't infinite. 
We can still get good enough. The printer I have access to in the engineering computer center prints photos at 600 dots per inch. You can get pretty close with 600 dots per inch, even with having the triangle sides only be a quarter of an inch. 150 dots per (horizontal/vertical) triangle side.
And a pixel isn't a point. It's a box. We can find which box the exact point belongs in and color that pixel dark. And it will be good enough.
And I had all this philosophizing before I did the logical thing. I Googled triangle dot paper. Lo and behold, the same site I use to make my square dot paper does triangles too. So I made a pdf and printed a couple copies to play with.
And I made a hexagonal pattern!

Friday, May 10, 2013

Think Fear. We Do.

Trigger Warning: Passing mentions of anti-vax, Boston Marathon bombing, 9/11

Yes, that's a spoof of the URI "Think Big. We Do." Because fear is more accurate, apparently.
Back in April, we had a lockdown because someone suspected an active shooter on campus (there wasn't one.) And we're a state away from Boston, so we did hear a decent bit about the whole marathon thing. (Frankly, the way that they actually shut down the whole city scares me a lot more than the bombing did, because I'm thinking about what this could serve as a prerequisite for.)
And then, with a little more than a week left, URI announces that it is moving the graduation inside, for sure. For "safety."
Um, no.
There are two main arguments I've got here.
1) We shouldn't be letting fear rule us.
2) It's not actually safer.
So, here's the first: We shouldn't be letting fear rule us.
Bad things happen when we let fear rule. The much-hated Patriot Act? A result of the fear following 9/11. War in Iraq? Result of fear, again. Fear largely coming from lies, by the way. The current measles epidemic (Europe, specifically the UK if I recall)? Yes, fear. That fear came from study fraud about a vaccine and from fear of autism, specifically. Whooping cough running around? Fear again, vaccines again. The entirety of 1984? Fear, fear, and fear, mixed with a healthy dose of hate. Because we hate what we fear. Basically every quack cure for autism ever? Sold on fear of disability, discrimination, abuse that parents think they can save their child from if only they didn't have autism, plus a healthy dose of fear about what autism means for the family. I could go on. Or I could remind everyone about how those who give up liberty for security don't tend to get either.
Which brings me to my second issue.
The Ryan Center, where indoor graduation is? NOT SAFER. Here's some reasons why:

  • It was already the rain location. That means that if someone was planning to do anything to graduation, they already had a plan for "What if graduation is in the Ryan Center?"
  • In the event of an emergency, being able to enter and exit quickly is important. It's not something you can do at the Ryan Center. It's pretty easy on the Quad.
  • The "security" measures they are taking are pretty easy to beat. Like, I know several ways to get things through, even assuming that any bags really are searched. (Seriously, bags "may be subject to search, as needed." Realistically, that means that a white man is highly unlikely to be searched, even though they are statistically speaking the ones most likely to do that kind of thing. Oh, and the Boston guys? I haven't kept enough track to know much, but their photos were definitely of white-passing men, at the least.)
  • No, really. The security measures are a joke. Go read about security theater. That's what this is, all the way. 
I'm not really expecting that anything will change their minds, but there is a petition. And if people felt like signing it, that would be cool, even if just so that URI has evidence of how unpopular this thing is and hopefully don't try this ever again.