Cracked Mirror in Shalott

THis Blog has Moved!

2010-06-07T17:12:00.000-07:00

I've moved this blog over to Wordpress. You can find new posts at:

http://crackedmirrorinshalott.wordpress.com/

Please feel free to follow me there.

Charities

2010-01-18T15:20:00.000-08:00

This is not a normal post for me here. I wished to provide a link to a charity, and decided to make a list of various charities that I support that I wanted you to know about. I will be updating this post periodically to add and edit links.

ASAN (Via Change.org): Autism Women's Network:

...............

American Association of People with Disabilities

ADAPT

The Red Cross Haiti Relief Fund:

Chabad.org's Haiti Relief Efforts:

Big Cat Rescue:

[Ongoing edits to add more to the post]

Ari Ne'eman Appointed to The National Council on Disability

2009-12-18T12:47:00.000-08:00

Good News for the Autism community, and for the cross disability movement as a whole. Ari Ne'eman has been announced as one of President Obama's latest Presidential Appointees. He is currently awaiting confirmation by the senate for a position on the National Council on Disability. You can read the press release on the White House website here, as well as the names and Bios of other Appointees.

This is a big step forward for the Autism Community, particularly (but not exclusively) for the Neurodiversity movement. Ari has been pushing for the needs- and rights- of the Autistic community for years, and to have him appointed to the NCD is certainly the next move in his unrelenting efforts to promote our cause. He has also been involved in cross-disability efforts, an important thing to keep in mind.

There are a couple of pieces about him worth reading if you want some background from someone who isn't a Blogger. The UMBC article has a lot of information about his childhood and how he got into advocacy, and he has been featured as a leading Autism Advocate in such publications as Newsweek Magazine and New York Magazine.

I have contacted my Senators and President Obama to let them know how pleased I am about this appointment:

I would like to let you know how pleased I am with President Obama's recent Nomination of Ari Ne'eman to the National Council on Disability.

Mr. Ne'eman has worked tirelessly to make sure that the interests of individuals of all ages across the Autism Spectrum, be it Employment Issues for higher functioning Individuals, Access to AAC Devices for those who are non-verbal, or even in assuring that the lower functioning individuals on the Autism Spectrum are safe from care giver abuse and have access to community based services. His work promoting the causes of the Cross-disability community helps all disabled Americans fight prejudice and give back to their communities.

I am proud to have his voice as the one that is representing my needs as a Disabled American, and look forward to his confirmation, as well as all the work he will do on the NCD. I also look forward to his working along side you all to protect the interests of all Americans though these efforts.

I would like to encourage you all to write similar letters of support; Congress.org is a useful tool for this, but if you don't want to register, you can look up your Senators and their contact info on this page of the Senate.gov site. If you want to thank the president, you can do so either through the above mentioned Congress.org or on the White House website, here.

Ari is not only an openly Autistic appointee, he's also the youngest in US history- the previous holder of that title was Mike Lopez at the age of 24. But his experience in disability advocacy is larger than some people ten years his senior- just look at the mini-bio in the Press release, and realize that it is a MINI bio. He just spent this past summer in an internship in DC, and has been very active- both quietly and in the press- over the last several years, all while also being a full time student. With his graduation coming up in the spring, I am looking forward to seeing what he'll achieve next.

Seclusion and Restraint- An Update

2009-12-11T21:27:00.000-08:00

Back in May I covered The Ed and Labor Hearing on Seclusion and Restraint. This week, there is an update on that front- Chairman Miller, Representative McMorris Rodgers and Senator Dodd introduced Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and Preventing Harmful Restraint and Seclusion in Schools Act (S.2860). You can watch the press conference that was held on this here (WMV) or read the Press Release.

Many organizations and coalitions applaud this introduced legislation, Saying that it is a big step for the rights of students across the country. Justice For All Action Network released a statement (Which you can read at ASAN's site) stating that they were pleased as it has been one of the key components of their agenda. And Families against Restraint and Seclusion certainly see this as a step forward.

However, in the meantime between now and when the bill passes into law, a lot of things could change, and a lot of things are terrifyingly staying the same. Michael E. Robinson* of Parents United For Special Education recently distributed information about a case of school abuse in Cobb County, Georgia involving a 13-year-old Autistic student. For that young Georgian, the fact that people in DC have introduced legislation doesn't take back the abuse he's suffered since the May Hearing. Robinson also comments that he believes "it's a shell that will need to be amended with some strong and heavy additions" and calls for the president to speak on the issue in attempt to get it the attention it deserves.

There is some legitimate Criticism of the bill as it stands now. As blogger Astrid writes in her post, certain phrases are really subjective, such as "imminent danger." This has been a common concern about laws surrounding this issue, especially in Florida where it has been brought up over and over again. Too often, aides interpret situations that are not ones of true imminent danger as such, resulting in an escalation. These false positives are often reported vaguely, and as a result the truth of the incident is left in a he-said-she-said battle.

Another concern is that because the "teeth" of the bill is left to the states, the effectiveness- or even swift implication- of the bill is impaired or even neutered out completely. One of the other issues mentioned in the debates about Florida's regulations is that the lack of consequences make the regulations useless. The bill states at Sec6(a) that the states will have 2 years to come up with state level regulations that must include enforcement (Sec 6(a)(1)(B)), among other things. My question is what is to happen in the meantime? And while there are measures to prevent them from delaying the process past the 2 years, there are no suggestions as to the minimum enforcement standards.

Another issue that I am worried about is that Section 5(a)(4) will be used to prevent parents from specifying their wishes concerning the school's policy on the restraints the bill does allow. Sec.5(a)(4) states that Seclusion and restraint my not be written in as a planned intervention into an IEP or other plan. While this is intended to prevent schools from pressuring parents into consenting to Seclusion and/or restraint in a child's IEP, I fear that some schools might use this to justify restricting the amount of say parents have in mitigating issues with school policy.

Even with these concerns, though, I think that this bill represents a great step forward for all students. Hopefully it will result in fewer students being injured, tortured, or even killed in our schools.

Wright's Law has not yet posted its analysis, but their post on the bill is pretty good and they expect the analysis post to happen in the next week. I'm interested to hear their list of pros and cons- and hopeful that they will be able to clear up some of my concerns. After all, I'm not a lawyer, just someone who wades through legalese out of fun and need!

I'm also interested in other opinions on the bill as it progresses through the House and Senate, and am curious as to how it will be strengthened- or weakened.

* Please contact me if you get this so that I can link you in and provide readers with more information.

NOTE: if you have links to further commentary about criticism of the bill, please let me know.

Psych Meds and Me

2009-12-03T15:58:00.001-08:00

Today, I received a phone call from the office of my Primary Care Physician (some might prefer "general Practitioner"). They asked me if I had an appointment with my psych doctor- yes- and then unleashed some horrific news on me. My insurance- Medicaid/the PA Access card- was turning down paying for my Cymbalta and they thought I should talk to the psych doctor about another medication.

For another person, this might just be poor news. For me, this is horrifying news. Earth shattering, maybe I should just kill myself now and get it over with news. You see, there's a reason why It's hard to get me to take certain medications. I was part of the generation of over medicated, pre-teen guinea pigs.

The earliest I remember taking Psych meds Was 4th grade, but it's possible that I was put on them before that and I don't remember because we did a lot of herbal medicine (Echinacea, St. John's Wort, Tea Tree Oil, etc.) when I was younger. (My mom still does herbalism- and Comphrey Salve is amazing.) From then until I turned 14, it was nearly a new med every 2 or 3 months.

On one med they put me on when I was 12, I gained 60lbs in three months. Around the same age, I started having random pain for no reason which I thought was from the weight gain alone. After all, my mother's second husband was always telling me how horrible being whatever I was was, and that if I hurt that was the reason. Now, over 10 years later, the pain that I brushed aside as being my fault because of my weight has been identified as Fibro myalgia. I have tics that I don't remember having before those days, though I never mentioned them to anyone and my mother thought they must be voluntary. I was in placements that gave kids Seroquel in order to make putting a ward of emotionally distressed kids to bed easier. I was subjected to any number of medications whose use in minors had not been tested, or at least had not been published.

(I should post another time about the effect of yelling at someone and telling them they are faking does to someone long term. I've had it result in not getting even medical treatment until the last minute. Only so many times when you are called a malingerer before you start to believe it.)

When I was 14, I quit taking my medication, and did fairly well- my mother had left her second husband, I had a supportive psychiatrist, and a mom who was into lifestyle management. For several years, I struggled and faught so that I wouldn't have to be put back on them. I was successful until I had a mental breakdown when I was 18 (My first adult hospitalization; there were 3 in total), when I was on something for a couple of months, again when a year later I was housebound, and again for brief periods during another two hospitalizations. Each time, despite my pleas that it was my anxiety that was the issue, not my depression, I was put on medication designed to treat depression or Mania. Each time, they were failures.

When I lost my insurance, I went a while without medication, and things were bad. I was too anxious to do much of anything by myself. Finally, this fall, I got Medicaid and my mother suggested Fibromyalgia and anxiety to my PCP, and they sent me home with a sample of Cymbalta. While I was anxious about being back on medication, This new medication was different. The parts of myself that I love weren't blunted, but my General, non-triggered anxiety and the near constant nerve pain was gone. It really was like a magic pill, or the end of a long, hard journey. And one of my worse fears became that they would tell me that I had to stop taking the first thing that had actually worked.

So when the administrative employees at the office that was bought out when my PCP (who I'd had since 4th grade) moved to teach at Duke called, I freaked. I tried to explain that this was it, there was nothing else for me to do, and I was NOT going back through the Hell that had destroyed me as a child. That there had to be something. . . But the employee was horrible, unsympathetic, and insistent that I would have to do the guessing game again. I hung up on her.

At first I tried calling my best friend, but his phone was off. *peers archly in his direction* I tried my mother, but only got her answering machine- where I left a surely unintelligible message between sobs. I turned on glee and tried to watch it, but I barely remember it. One of my cats- Tribble Magoo- came over to me, leaned against me, and started purring at me in an effeort to calm me.

Eventually I called Ms. Janet, my neighbor. Explaining who exactly Janet is is a long story, but she's in short a family friend with experience with disability issues. Between fits of sobbing, I explained what had happened. She was FURIOUS. you see, in cases like mine where other options have been exhausted, Cymbalta will e paid for as a medical necessity under Medicaid- but only when the doctor does their due diligence.

Now, the new people at the office have lost sight of folks as people, and the new owner really does treat people like case numbers (they also lost my whole family's medical records dating back to 1996) and a hassle. There's only one person there who actually listened to me but the amount of power he holds in that practice is limited. In short, that they have become like this is both horrifying and makes the failure to fight for my needs almost expected.

Tomorrow, Janet and I will be finding me a new doctor, and I will be writing a letter to my old practice informing them EXACTLY why I am leaving.

Sadly, there are people who don't have family and friends to fight for them. Even though I have a lot of change that I am scared of, and lots of tears to go yet, at least I have supportive friends and family.

Back, and I got published in the NYLN news letter!

2009-11-05T16:18:00.000-08:00

Sorry I've been away- I've been sick for a week and a half with the H1N1 (Swine Flu) and I have so much I'd like to write about. Some of that requires it's own post, though, so I'll try to get to it in the next couple of posts. On the upside, I just mailed out the disability forms with the help of my grandmother's Partner- I have a hard time filling out forms about myself. I can't sort out what's relevant or how much to write for a question, and get anxious that I'm not interpreting it right when I try to do them myself.

Tonight, I wanted to let you all know that I've had a short essay published in NYLN's Fall Newsletter*! My essay is on page 12 as "Coming Out with Pride" and compares My process coming out as Bisexual to coming out as developmentally disabled in light of both National disability awareness and history month and National Coming Out day.

The version that was published was edited a bit, but you can also read my original essay here, on google docs (you don't need to sign up or anything, it will just load).

I do recommend that you read some of the other articles in the Newsletter, though! The newsletter is Quarterly. THere are sevveral topics covered this time, including Tourette Syndrome, New newsletters like Riot (which I've just signed up for!), and an article on healthcare reform. There are also several articles on the importance of remembering our history and the accessibility that arose from the cross-disability movement.

*Let me know if you are having issues viewing the document- I had issues in my default word program but not in open office.

PRIDE!

2009-10-11T17:36:00.000-07:00

It's National Coming Out Day today!

I'm Bisexual, Panromantic, Biologically Female with a fluid gender Identity, and on the Autism Spectrum- and PROUD.

Thinking about coming out as a sexual Minority? There's some guides available here. An Ally? Spread the love. Can't come out? Don't worry, you still have allies. Discuss what ever ou are comfortable with at Pam's HouseBlend post.

I'd also like to mention that LGBT doesn't cover all of it in the letters. There are So Many variations on human sexuality and love.

Check out AVEN for info on Asexuality, and This thread on why A is part of the pride movement. Also, I think Clay's recent post about his Marriage is a good post for today. Asexual Pride day is Tomorrow, the 12th. Several of my friends are Asexual, both out and closeted.

Some people have claimed that an unusual amount of people on the Autism Spectrum are queer in some way, though I'm not sure if it's true or that we just don't get all the things that keep other people closeted. I've met Asexuals, Bisexuals, Heterosexual and Homosexual people on Spectrum, as well as cisgender, transgender (both non-op and op), and fluidly gendered folks. I think maybe more of us are out to ourselves, but I don't know that there are more of us than in the general population.

It's also time to remember the closet we've come out of and that some people are still in. Until the 1970s Homosexuality was in the DSM, considered a Mental Illness, and there are people that believe that it is still- and use therapies that The APA has recognized as Ineffective at best, but commonly harmful to the individuals (APA's release can be read here). You can Read the APA's other statements on LGBT issues at their LGBT portal.

It is often quoted that LGBT youth have higher rates of depression. And maybe that's true, But I heard a young man speak once on the topic. He said, "It's not the people who are already sure in their identity that the rates are higher. It's in the young people, those who are still Questioning, who haven't figured out how they fit into their world yet that we have so many Depressed and suicidal youth."

What about you? Are you out? are you ready to be out? Are you an Ally? How has your identity interacted with your life, as a parent, as an advocate, as an Autistic or NT, as a person dealing with Mental Health, as a PERSON? Tell me your story!

Photo was linked around on twitter, and is not my own.

News and Numbers

2009-10-09T17:56:00.000-07:00

First, some Personal News: I'm the new Assistant Director for AWA-Pa Alongside the wonderful AspieTeach, our Director for PA. Please check out the site and let me or her know If you have news or resources for women on spectrum in PA!

Also in the Positive, The Rethinking Autism "Autistics Speak" video (My post is here) Is getting a lot of response. My biological father and I talked today, And he's been showing it to people at work, friends, and Even his Therapist. They even used it as a way to prompt discussion is session.

In a broader sense, Rethinking Autism has been getting some community Media Exposire. AWA Radio had Dana on, and she's scheduled for Mad as A Hatter (air date might vary, V's been ill). If you have a media outlit, please consider asking Dana on! I've had several people tell me they'd love to see Rethinking Autism's latest video have a broader Audience, and I know Dana would love that as well! After all, our message is meant for everyone, not just the Autistic community.

And now, Numbers games:

a couple of articles are out about statistics in the Autism Community. One news Study claims we are at 1 in 91 US kids on the spectrum. This, of course, is including the entire spectrum. What is interesting about these new studies is that previously, we had claimed to have a lower prevalence (1 in 150) than other countries (UK claims 1 in 100).

Another Study Claims the numbers are at 1 in 110 and which has been covered by Left Brain/Right Brain. It should be noted that this was based on parent reports of behavior received via Phone surveys- not the most scientific way of collecting data. It's imprecise, but it certainly gives us a lot of leads for future studies that will hopefully involve more reliable data collection. Also, some of the parents claimed that their children are no longer on spectrum, which raises further questions. I reccomend the above linked article for a good analysis of this study. (USA Today also covered this story.)

Speaking of all these numbers, left Brain/Right Brain have a good question- Do We Need an Epidemic for People to Take Autism Seriously? This post is a well written and detailed look at the numbers and epidemic centered tactics used by various groups, and comes away with an answer- No, and Epidemic language might even defeat the purpose. Definitely recommend this one.

1% rate and Analogies

2009-09-28T11:32:00.000-07:00

A couple different things today.

1) On News-Dump day (Friday night is the time to dump news you don't want carried too far; see this) The CDC revised their Autism statistics from the "1 in 150" to "1 in 100 to 1 in 300 with an average of 1 in 150" Americans. This reflects the wider use and acceptance of the diagnosis. (link, Note: the writer is very curebie.)

2) New Study suggests that Analytic thinking isn't significantly impared in Autistics, compared to developmentally normal age-peers.

[I]n the new study, kids with autism discerned the overall context of visual scenes and relationships within those scenes, Morsanyi says.

“This finding is quite important and adds to the growing body of evidence that cognitive deficits in autism are not yet properly defined,” remarks psychologist Laurent Mottron of Hôpital Rivière-des-Prairies in Montreal.

Which was important to me because of how I learned to comprehend similes and metaphor- via Analogy.

ASAN-PDX protests against AutSpks

2009-09-27T16:48:00.000-07:00

Yesterday (Saturday) ASAN-PDX Held a Protest at an AutSpks march. THe Press showed up, and they ended up on the state News!

KOIN 6 (CBS) Aired this As their Lead Story at 11pm Newcast:

Good Job Elesia! They were also featured on the local Fox station, ~~but I don't have a clip of that on hand.~~ Which I have just located!(edit: September 29th)

ABFH mentioned it in her HUUUUGE round up about the AutSpks controversy.

Rethinking Autism: "Speaking for Myself"

2009-09-26T10:36:00.000-07:00

The timing of the recent hullabaloo/AutismSpeaks Fail is amusing to me. Why?

Because the latest Rethinking Autism video is Out!

"Speaking for Myself" features the voices of actual Autistics providing voice overs. I am the Savannah that Speaks twice in the video- once at "Celebrate Neurodiversity" and again at "Why shouldn't I have a say in laws, organizations, and research that involves me?" Also featured are Dora Raymaker, Steven Kapp*, and David Mahaffey*. The Captioning file was contributed to the wonderful Codeman38. We would have been able to participate in the filming but there really wasn't money for that.

Rethinking Autism is maybe better known for some of their more Risque (read: actress in revealing garments) videos encouraging people to look at the research. Included are topics on No Vaccine Link, Special Diets, Inclusive Education, and Neurodiversity. Rethinking Autism attempts to comment not only on these issues but also on how celebrity and sex appeal is used to spread misinformation. In their Key Concepts page they give a run down on common misconceptions and direct people to sites containing more information.

On a related subject, Cat in a Dog's World has an excellent post on the Diagnostic Double Standard in the Autism conversation. Those of us that are closer to the "passing" end of the spectrum are included in the statistics used, but yet when we speak up, too often parents say that organizations like AutSpks "aren't talking about" us. And by us they mean not only those of us who can almost pass, or even those of us who can verbalize, they also mean "those on the internet".

There's an assumption that if you can use the internet, you aren't "Autistic Enough". Now, All that says to me is how much of a lack of hope or vision in the parents that think this. Drew Goldsmith, a talented young director who has been featured at film Festivals, is Nonverbal. Dora uses AAC devices to communicate. Carly Fleischman Approached her computer and began to type, and has revealed her life even though for years she was brushed off as "mentally deficient." The assumption that if an Autistic is on the internet they are less "severe" is bogus.

* Steven and David, or anyone who is better acquainted with either of them, could you give me a link for you?

ETA: This is a personal note: My biological father watched the video. Now, I've mentioned he's always been a little uncomfortable with the MH DD thing, but has become supportive. He watched the Video, and sent me a text message. "Loved the video. You spoke very well. Love Girl." :D :D :D

Backlash and a Few Days Out of the Loop

2009-09-25T10:06:00.000-07:00

I went to my grandmother's for a few days (also: caught a ride to my blood work appointment) and the timing for that was SO not right. But I think I needed it (as it's too early to see results for a new med) as I'm feeling a lot better and more prepared to do something other than sluggishly struggle to fit thing together.

A lot has happened since I went to Grandmother's.

A good and comprehensive round up can be found on Liz's I Speak of Dreams. Please contribute to her round up if you have anything! Also, my friend C1audia has an open letter on her blog that Is a good read. (C1audia is awesome, and I recommend you give her whole blog a look. )

I don't always agree with The New Republic's style (I'm too bleeding heart), but I do agree with their latest post- and am tickled by what it has to say. First of all, A parody called "I Am Autism Speaks" was put on youtube supported by them. Here it is:

It promptly knocked The AutSpks "I Am Autism" down in youtube ranking, and caused the PR firms to panic. They've been tracked on the New Republic site. In addition, Autism Speaks UK has choosen to disassociate itself in the following manner:

..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..

Ouch!

I'll try to keep up to date on this matter.

(sometime later in the evening)

So, New Republic is currently the number one Search Result for Autism Speaks on Google Blogs. (you can either click on the above link or here for a screen cap.)

Rate for Autism Hasn't Risen (Duh)

2009-09-23T08:11:00.000-07:00

Time for some Positive information, I think.

According to a recent study in the UK by the NHS Centre, Autism rates in adults are about what they are in children. The NHS's report can be read here.

NHS is The National Health System, and the Centre does a lot of statistic gathering and the like in order to support that system. The information gathered in this case backs up comments from various organizations as well as other studies that have suggested that Autistic Adults are underserved in the UK. In this study, Adults on Spectrum were just as likely as the general populace to received services.

A note: this study was conducted with the UK's Adult Autism Strategy due out in 2010 in mind.

The conclusion in the news article is that since the rate seems constant and the MMR wasn't introduced until the late 1990's, it is further evidence against the Vaccine scare. I will note that there's a lot of anti-Department of Health paranoia in the comments of the article, but those familiar with when this sort of information is published will also be familiar with those comments.

The NAS (National Autism Society) Seems pretty pleased about the whole thing, in any case.

AutSpks Once Again Demonizes Autism

2009-09-23T06:05:00.000-07:00

I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here's the Run Down, and the Round Up

The Run Down

AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as "a bright spot on Autism" that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.

Red flag number one (other than the fact that it's an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I've worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.

In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer's fault and is sealed by this final phrase: "I further represent and warrant that I
have the right to give this consent and no other consents are required."

Wording means everything in legalese.

The form also uses wording that would tip off some people, such as "global health crisis of autism" but perhaps not your general parent, particularly those of newly diagnosed children.

The actual video is. . . well, the only word I can think of is "appalling" and even "blatently Offensive." (If you don't think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)

..

My response (in 500 chracters or less, as that's Youtube's character limit):

I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx'd HFA, now Dx'd Aspergers due to early social supports and encouraging interests in sports as a family).

I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I'd fail.

I am offended, & must say that AutSpks does NOT Speak for me.

I'd encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.

I'd like to additionally add that I'm disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron's style, so this was even more of a disappointment for me. Shame on you both.

Community Response (Or the Round Up)

The community has had a huge response. Here are some responses (and feel free to link me to others!)

Cat in a Dog's World has a fabulous response with some ethical questions and why we object.

. . . As well as on the use of the Embaressment Trope and a script for a parody.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an "I Am AutismSpeaks" script.
Codeman38 has posted on his own blog.

-I left to visit the afore mentioned Grandmother, and it went on!

* I have saved these to my harddrive in case of site take down.

Healthcare Reform, pt 1: A Personal Story.

2009-08-19T15:14:00.000-07:00

This week, I'm going to be posting about Health care Reform. Later in the week*, I'll post some other sorts of information- including some info from various MSM resources, some data about some of the misinformation out there, etc.

Today's post isn't about the financial, political, or practical points that matter to politicians though. Today's post is about what it means to us as human beings, and about the personal stories that don't get factored in when it comes time for a politician to vote. (Well. Sometimes they do. Sometimes.)

My opinion, to be up front, is pro-Health care Reform, and pro-Public Option. I think it's the only ethically sound thing to do. But I know that while I'm not the only one that thinks so, there are plenty of people who think differently- and are equally or more so passionate about that opinion.

They have their stories about health care and Insurance. I, on the other hand, have mine. It's a bit long, and very embarrassing at parts, but I think it's important to share these things faults and all. I encourage you to share your experiences in the comments, or to link me to your experiences, whatever your opinion is.

My Story

When I lost my insurance- or rather, when the insurance company realized they didn't have to cover me anymore- was when I was pursuing psych treatment. To be blunt, I was having suicidal Ideations but was too depressed to actually go through with any of them, sure that if I tried I would screw it up. My General Practitioner heard this and asked if I would go to the hospital if he referred me. After some debate, I agreed.

In the ER (which is where we had to go for psych intake) we sat in the little room for hours. The time had little to do with doubts about my need, and everything to do with insurance. Up until that point, I had been under my biological father's insurance as per what had been worked out in the custody agreement years before. I had been going to school up until 10 months before, and so was at that point still covered- or so we thought.

My father's insurance wouldn't accept the local hospital's psych ward, despite having accepted it two years previously. They wanted me at first to go to C___ Psych, which I refused on the basis of having received poor and inappropriate treatment there in the past and because my sister had as well. Not to mention the untold number of other people who have chimed in that they received poor treatment there as well (That's a story for another time).

Next they wanted me to go to Mercer, over an hour away- and I would have to be transported by Ambulance, which they would not cover, and I wouldn't be allowed to have my mother with me to help me explain to strangers what was going on when words failed me. I was uncomfortable with this, and someone started the paperwork and asking some questions about transport. I was fairly insistent that I wanted the ward in the local hospital as that had been the arrangement I had made with my GP, but my mother spent a while trying to get me adjusted in case they really did have to send me to Mercer- an hour away.

After a while an attendant came in. She was very nice, but the news she had to tell us was not. It seems that after having insisted on a different site for treatment, the insurance company had suddenly realized that I was outside of the time span they needed to cover me under as I had not attended classes in the last 6 (or was it 9? I get them confused a lot when it's an image in my head- which it usually is if it's from paper work!) months.

Mid intake, I had gone through fighting with an insurance company over the site of treatment to not having insurance at all. I went into the ward associated with the local hospital not knowing how I was going to be able to pay for the treatment I was receiving, and not wanting to sign over Power of Attorney to the hospital in order to receive hospital funding.

(PoA was a big issue at the time for me- my step-grandmother had lost everything fairly recently due to her PoA of her would-be common-law husband being voided when she went into an involuntary commitment after seeking medical treatment. Again, a story for another time, and one that raises a lot of concerns about Elder Care and Mental Health.)

Honestly, My preoccupation with how to deal with it influenced my treatment a lot- I had something to focus on, and was demanding my rights, which means I was no longer suicidal. The doctor ignored what my condition had been on intake because by he time he saw me the next day, I was anxious about how my treatment would be managed instead of wanting to die. While it's good that I didn't want to die anymore, it means that my treatment wasn't for what I went in there for, and the underlying issues were not dealt with.

After I got out, it wasn't long before I was getting phone calls and letters about how I needed a way to pay for my treatment. At one point I shut down completely during a phone call with the financial people and started sobbing and shrieking. (Embarrassing. Memorable, but Embarrassing.) My mother grabbed the phone and told the woman on the other end that I was obviously still mentally ill and not in a position to take care of that right then.

I've also been reluctant to seek treatment due to this experience- even for medical issues rather than psych ones. It took me until I had a large ulcer on my skin from a bacterial infection this spring to go in, and it ended up being pretty horrible. I now have to be careful about my health because of that situation.

I still am trying to pay this off, and while I generally don't do the sobbing any more, I have a script I have to use to get through those phone calls. Some days I won't pick up the phone if the number doesn't have a name associated with it in my cell because I don't have answers for them. I've put money towards it when I've had money, but I lost my job in February. I charged off my bank account by letting it continue paying towards it and another debt rather than saving for food. Anxiety about not knowing how to pay off not dying is a near daily occurrence for me.

Thankfully, I have a happy ending of sorts in that I qualify for health care since I'm unemployed and in the process of applying for disability. It won't take care of my past debts, but it does mean I can now get medical care, and in fact am obligated to do so because of the Disability status. I don't know what will happen if my Disability case gets denied- I'll probably plunge back into the world of being unable to go to the doctor.

For many Americans, though, this isn't the case. Especially those with disabilities- especially those who wish to work and are able to. A woman on an E-mail list shared this thought, and I think it sums up the current system quite well:

The current system demands that either people be very highly functional so they can gain employment somewhere that provides medical insurance that covers pre-existing conditions, or live in poverty, in order to get medical coverage.

There is no middle ground.**

*I'm using the definition of week creatively to mean "the next 7 days" rather than "The set of time observed in western culture as Sunday through Saturday."
** Has been edited to remove personal info and structure. To the woman that said this: let me know if you'd like me to credit you openly.

ASA York to Take Down Billboards

2009-08-16T14:09:00.000-07:00

Earlier today, ASAN sent ASA York the following letter:

To the Autism Society of York, Pennsylvania:

The York, PA Autism Society has a well established history of working to advance understanding and support for families in the York and Adams county area. Your involvement with the HOPE playground, your extensive Spanish language resource list and your other activities set positive examples for other organizations throughout Pennsylvania. It is with this history of positive efforts in mind that we are forced to express our grave concern after having been contacted by a number of Autistic adults and family members about your current billboard campaign depicting Autistic children as kidnapping victims.

For decades, autism has been regrettably associated with fear and stigma. In the early years of the autism community, Bruno Bettelheim’s characterization of mothers of Autistic children as at fault for their child’s neurology ruined lives. In later decades, the same fear, stigma and constant search for blame persist even as science has discredited that particular causation theory. As we, Autistic adults and youth ourselves, attempt to assert our voices in the national conversation about us, we find ourselves characterized by those who often speak on our behalf as though we are burdens on society and individuals devoid of the full measure of personhood and humanity. Such mischaracterization threatens our efforts to be included in our homes, our schools, our communities and our collective society. By making the autism message one of fear, stigma and hostage-taking rather than one of civil rights, inclusion and support for all, our desire to be recognized as full and equal citizens in our communities is hurt.

The use of stolen-child imagery is one of many common motifs in autism awareness advertising. Unfortunately, it serves to send a message that Autistic people are less than fully present in our own bodies and are less than fully human. Such characterizations are frequently utilized to justify violence, prejudice and segregation against Autistic adults and children. The autism and Autistic communities deserve better than this.

It is due to these concerns that we respectfully request that the "Kidnapped" bill boards be taken down. We stand ready to work with you, the Autistic community of Pennsylvania, and any other interested parties to formulate an ethical replacement that sends a message of hope and support to Autistic people and our families rather than one of fear and dehumanization. Whatever awareness these billboards may bring, it is more than outweighed by the stigma and ignorance they add to a public conversation about autism that is already too full of such things. We believe that, working together, a better solution can be found.

Due to the public impact- locally and throughout Pennsylvania - we request a response no later than three business days (Thursday, August 20th). I can be contacted at aneeman@autisticadvocacy.org and by phone at 732.763.5530. Our Pennsylvania director can be reached at srobertson@autisticadvocacy.org. We request that you include him in your response.

Sincerely,

Ari Ne'eman
President
Autistic Self-Advocacy Network

Not long after, ASA York replied.

Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,
Amy Wallace
President ASA York

Short version: ASA York will be removing the billboards, thanks to the efforts of a number of people e-mailing and calling them this weekend. We have been able to join together as a community to voice our concern, and were heard. In a single weekend. How cool is that?

If you'd like to thank Amy Wallace for her prompt response that answered our concerns, her e-mail is amywallace3@gmail.com . Considering some of the local community projects that ASA York has participated in, it looks like we could see more community involvement to come.

York, PA ASA's Billboard Blunder

2009-08-15T20:32:00.000-07:00

Some of you might remember the Ransom Note Campaign that NYU Child Study Center ran briefly in December of 2007. Briefly because the disability community, 22 Organizations including ASAN, objected to conditions ranging from Autism to ADHD to Depression being depicted as kidnapping or possessing children. They were swiftly removed.

And it got a good amount of publicity, both within the disability community and in the MSM. A victory won, and after such coverage It should be obvious that this sort of analogy is inappropriate at best, damaging at worse.

I'd like you to meet York county, PA's ASA chapter. Or rather, thanks to Club 166's post,(and subsequent letter), their most recent billboard:

want a clearer image? well, it's up on their website, too, with the oh-so-descriptive note of "Several new billboards can be seen around York....":

Hm. Okay, so it's a parent quote, but why would this seem like a good idea in light of recent events? Even if this is something the parent said out of desperation at a support group meeting, why would it be okay to plaster on a billboard where everyone could see- including the children whose lives it is speaking so derisively about? (I'm leaving alone the larger question of why any parent dealing with ANY child with a disability feels so alienated as to feel this desperate for now.)

Right now, I'm working with ASAN to gather more information and organize a PA reaction to this. We are hoping to get them to take these billboards down- and hopefully to understand why they weren't appropriate in the first place.

Right now, we are in the first part of this process- ASAN has sent a letter to ASA about their York chapter and we're working on one to ASA-York to be sent in the next few hours.

If you, as an individual or as part of an organization, would like to contact ASA York to let them know how you feel about the bill board, here's their contact info:

e-mail: pa-york@autismsocietyofamerica.org
e-mail 2: info@autismyork.org
Phone Number: 717-801-1272

Please remember to be polite when contacting them. If you choose to call, make sure it's in normal business hours EST (New York Time) and be polite- no foul language, etc. Just a straight forward statement of complaint, short and sweet.

I'll keep you updated if I discover any more information, and on any further actions we attempt.

EDIT: Since posting this entry, the announcement on the launch of the billboards has been purged from the ASA-York site. If I obtain further info, I will post it tomorrow in a new entry.

Adam

2009-08-12T16:57:00.000-07:00

Back in early July (the 6th, to be exact) I went to a showing of Adam in DC at the MPAA building. There was a number of people in attendance, and most of the ones that I knew were involved in the Autism/Advocacy community.

I liked the movie itself a good bit. Adam is about a young man and a young woman who fall in love- the twist here that the young man, the titular Adam, has Asperger's Syndrome. For much of the film we follow Beth (the young woman) as she meets and then starts to fall for Adam while dealing with disapproval from co-workers, friends, and parents. It was cute for some parts, and though it is billed as a Romantic Comedy I found it to be more of a Dramatic Romance. (This sentiment has been expressed by others, such as Jake Crosby*.) There was a lot covered here, and a lot of the comedy was of a more NT nature.

At the screening itself we were asked what seemed to be standing out to us about the film. The most common sentiment was about how Adam is the only on-spectrum person we see in the movie; our worries about Aspergers becoming the new "Magic Negro" in film (ironic, considering the character's only friend seems to be a man who helps him with certain things and whose conversations were similar enough to the trope); and that the character of Adam simply h ad too many traits for one person.

As more and more people got in to see the movie, E-mail lists exploded. (Not literally of course!) Each person on spectrum that watched had problems with different aspects of Adam's character- often the same aspects that others most strongly identified with. As a community, we Identified our number one issue- that Adam was too obviously a composite character.

(Some blog** reviews: Sister Sunshine's, Abledbody, Aspie perspective's not-review, Autisticcat's Not-review, Aspieteacher's review, Note: though as you can see I'm not posting spoilers for the movie, some of these reviews do.)

In the end, though, it's a movie I- and others- want to have seen. I know of at least two Canadian Autistic friends on Twitter who want to get a showing locally at some point and who I've been actively communicating with. Right now Adam is on a limited release, and is releasing to a gradually wider audience over the next month. (If you'd like to know when the release nearest you is scheduled, Foxsearchlight- the distributor- has a list of anticipated release dates.)

Currently, the "wide" release date shows mostly major cities, but not everyone lives in major cities. The nearest anticipated release to my hometown is in Pittsburgh- around a 2 hour drive each way. And the thing is that the people I want most to see this are unlikely to travel that far for it. These are the Parents who crave something positive about the adult their child might grow into someday and the employers who don't know what is up with that one employee. The girlfriend who doesn't know what she's doing and the young man who doesn't identify himself yet. The young adult who doesn't have the support structure he or she needs to enable a ride so far- and doesn't know how to develop it.

Those are all the least likely to travel two hours to see a movie for various reason, be they the time away from the home or office, not seeing enough relevance for that sort of trip, or not being able to arrange the transportation. But they are the ones that will benefit the most from watching this movie, not the ones who have been hyping it and have the means to travel that far.

So I, and some others, are looking for ways to push for a local showing, even if it's only a one-time showing. It's why we are leaving comments about our interest in a wider release on the distributor's page. It's why we are reaching out to the local groups for autistic and for parents and why we are nervously approaching the manager's desk at the theatres. It's why we are tweeting about it, why we are talking about it on facebook- or making snide remarks about the NT-biased quiz- and myspace, why we are hyping it.

Because there IS a segment of society that needs the exposure that this movie gives, but won't get it unless we do something.

Consider this my asking you to join us in getting this to local theatres. I'll be asking the Movies at Meadville if they'd consider having Adam as a weekend showing this fall, and have been asking others to do the same in their locally run theatres. I'll be talking to the support groups in Venango and Crawford counties about having them express interest in a showing, in perhaps going in as groups. Maybe I'll get up the courage to ask the meadville Unitarian church about it.

Remember, the more interest that is drummed up, the wider the release gets, and the more people who see it and start to ask questions about their perspective of who we are.

* Please note, just because I'm linking to an article doesn't mean I agree with the individual in all or any aspects other than explicitly mentioned, and I might even have some major philiosophical issues with them outside of the context in which they are mentioned. I feel, though, that my moral obligation to share information outweighs those differences in this specific context.
** Got a review? Let me know! I'm always looking for more info for people. Also, the not reviews are reactions to the publicity that are relevant to the discussion but by people who are anticipating seeing the movie.

And here's a Trailer for your dose of video clip:

Goodness, a personal post? REALLY?(aka, father-daughter conflict)

2009-05-28T22:25:00.000-07:00

[NOTE: I have removed some things from the Entry below after my father found this and expressed his discomfort with some of the way I took some things. I appologize.]

I am visiting my father this week. My biological father. A man who ideologically I have nothing in common with. A man who gave me a good portion of my genetics, for better or for worse.

Don't get me wrong, I love my father, and his wife Rose. Their actions and ideology is suited to their position in their culture and among their peers. They care about me, even if their way of showing it irritates me, and my way of demonstrating affection towards them is not as they expect. (Apparently Rose was for years under the impression that I disliked her as I didn't demonstrate affection in a way she expected- until my Dad reminded me when her birthday was and I sent her a picture of a muffin. She cried to know I cared, and I was shocked to know she didn't know.)

My father is terribly of a conservative mind. Don't get me wrong, he's okay with homosexuality and he's pro-decriminalization of Marijuana. But is personal ideology is inherently conservative. It is based on the idea that it is weak and wrong to rely on society or any one other than one's self for anything- that in fact it is a foolish move to do anything that does not benefit yourself.

Under the umbrella of his ideology is a complete and utter rejection of the social model of disability. For those unfamiliar with the social model (and are too lazy to click the link),

"The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society."

The first time I heard my father reject this thought was not in a disability context in particular. I was listening to music and mentioned that I loved the message of the song. His response was to ask if is was "one of those songs that blames society for problems" and that he thought that such a message was idiotic. It wasn't, but then on I have heard him say further things in the past 7 or 8 years since.

In a more general sense, it's rough for me. I'm a liberal, I suppose, though perhaps progressive is more acurate. While I recognize that there are a lot of parts of my ideal world that aren't possible due to human nature, I still think it's worth fighting for. And I am an advocate for "invisible" disabilities- many of whom are primarily disabled under the social rather than medical models.

While the individual has the responsibility to do what they can to get into a position that they are capable of and comfortable with, that does not exculpate society. And it doesn't mean that conformity is ideal, particularly in a disability context. There are members of the disability community that would like to conform. For them, they have an entire system designed to suit that need. But that doesn't mean that that is the only right answer, or that it is even a posibility for everyone desirable or not.

More particular to my situation of the moment has a more immediate effect that a worry about political issues and having to creep about when discussing work as though the topic is a mine field. My father does not accept Diagnosis. At all.

This has been a thing that has been consistent most of my life. My mother has always sought various services for me, even before she left my father. [content has been exized for privacy reasons.]

[Content about my father's reaction to my sister's TBI has been exized for privacy reasons.]

Fast forward to within the past 6 months. I was discussing a (now) ex-boyfriend and mentioned his OCD. My father went off about how OCD was made up to stigmatize people and several other things that I decline to repeat as they degraded into offensiveness.

I came out as on Spectrum last year. Most people I know know. My sister recently accepted it after a year of being convinced that you had to be non-verbal- She met some more people on spectrum and learned a few things. I've been living my life fairly openly- stimming in my own home and able to speak about what it is like publically.

I'm still not out to my father. I had him pick me up from Autreat last year, and I conveiniently left out that I was there as a person on spectrum. He knows I work with and advocate for us, but to tell him that I am a part of that us seems impossible.

While I have been up here, I have been unable to engage in activities that had become routine. I'm not talking about in public, I'm talking about around the house. I'm not allowed to be upset here by sudden changes in plans, and when I don't respond as expected there are issues and a number of misunderstandings. And I can't give a reason why.

It's harder than coming out as bisexual was, by far.

A moment of Zen: The Imagine video.

Seclusion and restraint in Schools- Our tortured students.

2009-05-19T12:13:00.000-07:00

Today was the House Committee Hearing on "Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools". (An archive of the Hearing can be found here, with select clips on the Labor and Education Committee's Youtube, and C-Span has it here.)

The GAO Report (PDF) Was given to the Representatives on the Committee ahead of time. These included* chairman Miller (D-CA), Andrews (D-NJ), McKeon (R-CA), Woolsey (D-CA), McCarthy (D-NY), Scott (D-VA), Hare (D-IL), Biggert (R-IL), & Payne (D-NJ), who were in attendance (though several arrived late due to other bussiness).

Miller's Initial statement can be found here.

Witnesses:

Ann Gaydos » Mother of a victim Monument, Colorado (Youtube)
Elizabeth Hanselman » Assistant Superintendant for Special Education and Support Services Springfield, Illinois (Youtube)
Mary V. Kealy, EdD » Assistant Superintendent for Pupil Services Loudoun County Public Schools Virginia (was unable to attend- letter of explaination on the website)
Greg Kutz » Managing Director
Forensic Audits and Special Investigations U.S. Government Accountability Office Washington, D.C. (Youtube)
Reece L. Peterson, Ph.D. » Professor of Special Education University of Nebraska Lincoln, Nebraska (Youtube)
Toni Price » Mother of a victim who died Killeen, Texas (Youtube)

As the Education and Labor Dems youtube has the testimonies divided up, I have put a link to each next to the appropriate person. Otherwise the above formatting is from the Education and Labor's Website on the issue. Also, these do not include the Q&A portion. see further down in the entry for those portions.

Gaydos brought her daughter, Page (Dx: Aspergers, formerly bipolar) as well. While I was disappointed that page didn't speak, I can understand why she didn't. She's still a minor (16?), speaking in front of people is nerve wracking, and the incident happened around 2001. Also, many people still discriminate against Those with "invisible" disabilities, especially if they attempt to advocate for themselves (usually saying that they obviously aren't that disabled). Her mother recounted her story, and How there were other families who had similar instances happen. She elaborated that the only reason why they were able to pursue it was financial stability, and that she has talked to many families that did not because they didn't have that amount of financial resources.

On a side note, I loved Page's outfit-though I wouldn't have worn that shirt. Well, I would have at 16, but that is beside the point. :)

Toni Price Was both witty and heartbreaking in her testimony. Her foster son was killed durring a restraint, and because she was "Only" a foster parent, she was told she could not pursue charges. This happened while she was in Texas. The teacher that even the representitives refered to as havin murdered her son is teaching today in Virginia**. There were several points where I thought she would break down crying. However she didn't, and when It came time for Q&A, she was sharper than a tack and extremely witty. She even talked back to McKeon (who I will get to in a moment)

I applaud Rep Hare, BTW, for his comment that It was shameful to have the attitude that Foster Children don't matter.

Here's Miller's Q&A:

Note worthy moment: look at 4:00-5:40. Here Miller compares some of the restraints to water boarding.

Throughout the Q&A sessions, various representatives compare this to toture, and I think it's of note that many of the

Here's Andrew's Q&A:

He starts right out questioning how useful the in place things are while pointing out WHY they are faulty and thereby suggesting how they can be fixed. This is mainly to do with why teachers who were put on a register for this in Texas's state registry don't automatically loose teaching certification in Texas, and how the Virginia Board of Ed didn't even KNOW that the teacher was involved in a restraint related homicide.

Also of note: He refers to Cedric's homicide as "murder", Refuted McKeon's points, and was very goal specific. (And now my first non-jewish political crush in ages. ♥)

Quotes: 6:36-7:00 "To those that imply that these cases are isolated and infrequent, that One is enough. And two, there are a lot of people who probably are not reporting these claims because - at least their trying- because no one listens to them because they are so voiceless." He also said that the fact that schools are blowing off concerns as just being "annoying parents"- that there was something wrong with that.

Unfortunately, these are the only two Q&As that the Ed and Labor Dems put up on their youtube account. There were other Dems who answered, but their Q&As seem only available if you watch the full hearing, as is McKeon's. However, since I'm so Disappointed in McKeon's Approach (also, what was I expecting, really?), I'm cutting it and posting it for your viewing pleasure.

McKeon (R)'s Q&A

Sorry for the poor sound quality, had to record the screen. *frowns*

McKeon's comments start with blaming Unions, and then going "but privacy!"

Toni Then is incredibly witty. She asks if Pedophiles are on a list that they have to report to. And then asks how it is that they are on a list, but teachers who murder students aren't, and McKeon laughs and agrees on the point.

I definitely don't like McKeon. At all.

The others that testified were professionals and they played in professional speak.

I have to wonder, though. We still have these things are going on in our schools, mostly to disabled students, and no one is talkign about it. And yet the Torture memos are BIG NEWS OMG. How is it any less worse that this is happening in our High, Elementary, and Pre-schools? Is it that tyhey are disabled that keeps people from outrage, is America really that callous? I expected more outrage, and instead I hear only a dull rawr.

*If I missed somebody, my appologies, I was going off my notes on Twitter, which were not complete. Corrections can be posted in the comments.
** I have been informed by a friend in VA that the teacher has been put on administrative leave.

The Terminology Post

2009-04-02T23:59:00.000-07:00

Note: This post has been back-dated for organizational purposes (aka, to put it with the other intro posts).

I might use some unfamiliar terminology or Abbreviations. In order to avoid confusion, I'm creating this post.

Please let me know if there are any terms in my blog that are unfamiliar to you, so that I can expand this post! Remember, I don't know what you do or don't know and the only way I'll learn is if you tell me.

Organizations:

A lot of times, I will reference Non-profits by their Abbreviations. But to those unfamiliar with them, this can be confusing. I know that I wouldn't know the abbreviations for organizations in the field of Physics or Mathematics!

ASAN- Autistic Self Advocacy Network (Wikipedia | Website)

NYLN- National Youth Leadership Network (Website)

ANI- Autism Network International (Wikipedia | Website)

PFI- Pennsylvania Families, Inc. (Website ; The State Wide Family Network for Pa)

PYLN- Pennsylvania Youth Leadership Network (Website)

Abbreviations
aka, Alphabet Soup.

ASD- Autism Spectrum Disorders

AD(H)D- Attention-Deficit (Hyperactivity) Disorder

DoEd- Department of Education

MSM- Mainstream Media

Terminology
Sometimes reading about a topic can be like trying to read Les Miserables in the original French with only a little French under your belt. While I try to keep acessible, I do use some terms that could be unfamiliar to some people.

Neurodiversity- (n) an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation. (Urban Dictionary | Wikipedia)

On Spectrum; Spectrumy- someone with an Autism Spectrum Diagnosis or suspected diagnosis.

Spectrum Cousin- Someone with other Neurological/Developmental divrgences such as ADHD, OCD, and others that might share traits with those on spectrum. For example, my mother has ADD, Narcopelsy, and Fibro Mylgia and would be considered a "Cousin." Also known as an "AC" or "Autistic Cousin."

Why call your Blog that?

2009-04-02T11:07:00.000-07:00

When Elaine fell and BrokenmirrorinShalott are both allusions to the story of the Lady of Shalott. The most famous and influential version is Tennyson's poem, the Lady of Shalott. I have an affinity to anything to do with this story- music, art, literature. . . Anything.

The reasoning has to do with how I experience my interactions with the outside world. When Elaine was exposed to the outside world it took away her- well, who she was, and she became an object that only lived for one other person. When that person rejected her, it was the death of her. The difference is that I retreat to my tower instead of poisoning myself and floating my body down the river. *winks* Also, I just like the imagery.

Tennyson's the Lady of Shallot (you can listen to it put to music and sung by Loreena McKennit here):

On either side the river lie
Long fields of barley and of rye,
That clothe the wold and meet the sky;
And through the field the road run by
To many-tower'd Camelot;
And up and down the people go,
Gazing where the lilies blow
Round an island there below,
The island of Shalott.
Willows whiten, aspens quiver,
Little breezes dusk and shiver
Through the wave that runs for ever
By the island in the river
Flowing down to Camelot.
Four grey walls, and four grey towers,
Overlook a space of flowers,
And the silent isle imbowers
The Lady of Shalott.
By the margin, willow veil'd,
Slide the heavy barges trail'd
By slow horses; and unhail'd
The shallop flitteth silken-sail'd
Skimming down to Camelot:
But who hath seen her wave her hand?
Or at the casement seen her stand?
Or is she known in all the land,
The Lady of Shalott?
Only reapers, reaping early,
In among the bearded barley
Hear a song that echoes cheerly
From the river winding clearly;
Down to tower'd Camelot;
And by the moon the reaper weary,
Piling sheaves in uplands airy,
Listening, whispers, " 'Tis the fairy
The Lady of Shalott."
There she weaves by night and day
A magic web with colours gay.
She has heard a whisper say,
A curse is on her if she stay
To look down to Camelot.
She knows not what the curse may be,
And so she weaveth steadily,
And little other care hath she,
The Lady of Shalott.
And moving through a mirror clear
That hangs before her all the year,
Shadows of the world appear.
There she sees the highway near
Winding down to Camelot;
There the river eddy whirls,
And there the surly village churls,
And the red cloaks of market girls
Pass onward from Shalott.
Sometimes a troop of damsels glad,
An abbot on an ambling pad,
Sometimes a curly shepherd lad,
Or long-hair'd page in crimson clad
Goes by to tower'd Camelot;
And sometimes through the mirror blue
The knights come riding two and two.
She hath no loyal Knight and true,
The Lady of Shalott.
But in her web she still delights
To weave the mirror's magic sights,
For often through the silent nights
A funeral, with plumes and lights
And music, went to Camelot;
Or when the Moon was overhead,
Came two young lovers lately wed.
"I am half sick of shadows," said
The Lady of Shalott.
A bow-shot from her bower-eaves,
He rode between the barley sheaves,
The sun came dazzling thro' the leaves,
And flamed upon the brazen greaves
Of bold Sir Lancelot.
A red-cross knight for ever kneel'd
To a lady in his shield,
That sparkled on the yellow field,
Beside remote Shalott.
The gemmy bridle glitter'd free,
Like to some branch of stars we see
Hung in the golden Galaxy.
The bridle bells rang merrily
As he rode down to Camelot:
And from his blazon'd baldric slung
A mighty silver bugle hung,
And as he rode his armor rung
Beside remote Shalott.
All in the blue unclouded weather
Thick-jewell'd shone the saddle-leather,
The helmet and the helmet-feather
Burn'd like one burning flame together,
As he rode down to Camelot.
As often thro' the purple night,
Below the starry clusters bright,
Some bearded meteor, burning bright,
Moves over still Shalott.
His broad clear brow in sunlight glow'd;
On burnish'd hooves his war-horse trode;
From underneath his helmet flow'd
His coal-black curls as on he rode,
As he rode down to Camelot.
From the bank and from the river
He flashed into the crystal mirror,
"Tirra lirra," by the river
Sang Sir Lancelot.
She left the web, she left the loom,
She made three paces through the room,
She saw the water-lily bloom,
She saw the helmet and the plume,
She look'd down to Camelot.
Out flew the web and floated wide;
The mirror crack'd from side to side;
"The curse is come upon me," cried
The Lady of Shalott.
In the stormy east-wind straining,
The pale yellow woods were waning,
The broad stream in his banks complaining.
Heavily the low sky raining
Over tower'd Camelot;
Down she came and found a boat
Beneath a willow left afloat,
And around about the prow she wrote
The Lady of Shalott.
And down the river's dim expanse
Like some bold seer in a trance,
Seeing all his own mischance --
With a glassy countenance
Did she look to Camelot.
And at the closing of the day
She loosed the chain, and down she lay;
The broad stream bore her far away,
The Lady of Shalott.
Lying, robed in snowy white
That loosely flew to left and right --
The leaves upon her falling light --
Thro' the noises of the night,
She floated down to Camelot:
And as the boat-head wound along
The willowy hills and fields among,
They heard her singing her last song,
The Lady of Shalott.
Heard a carol, mournful, holy,
Chanted loudly, chanted lowly,
Till her blood was frozen slowly,
And her eyes were darkened wholly,
Turn'd to tower'd Camelot.
For ere she reach'd upon the tide
The first house by the water-side,
Singing in her song she died,
The Lady of Shalott.
Under tower and balcony,
By garden-wall and gallery,
A gleaming shape she floated by,
Dead-pale between the houses high,
Silent into Camelot.
Out upon the wharfs they came,
Knight and Burgher, Lord and Dame,
And around the prow they read her name,
The Lady of Shalott.
Who is this? And what is here?
And in the lighted palace near
Died the sound of royal cheer;
And they crossed themselves for fear,
All the Knights at Camelot;
But Lancelot mused a little space
He said, "She has a lovely face;
God in his mercy lend her grace,
The Lady of Shalott."

Or an alternate interpretation of the story in Music By Emilie Autumn:

HI

2009-04-02T10:10:00.000-07:00

*nervous* So, um. I'm crazy, how are you?

That isn't a self depreciating statement- I live with Mental Health issues, and I don't have a problem with it. I also am "on Spectrum"- Don't have a problem with that either. The difficulties for me are in the fact that society is not structured in a way that makes who I am feasible.

Now, don't get me wrong, I have no problem making little compromises in order to interact with the world. Thing is, I too often don't let people know that the compromise is being made, so they act as though not compromising more- past the point of extended feasibility- is selfishness or just plain old not trying.

It makes me nervous to do a lot of things that are fairly normal for people to do. I'm terribly anxious on the phone, I become panicked filling out paperwork, and some days it take courage to leave the house. Some days I'm more capable of these things than others- Some days I will make some phone calls, get caught up on paperwork, and even go into town without a problem. But those days aren't frequent.

I tend not to do well with people face to face. I tend to miss about half of the intended meaning due to having difficulty recognizing non-verbal cues in others, and have more than once had people misunderstand my own meaning because I simply didn't realize that I wasn't displaying the Non-verbals they were looking for. Most frequently, I don't get my tone right, or my volume. Unless I'm on stage, of course, but stage work requires a lot less processing and a lot more putting yourself out there. I'm rather distracted if I have to make eye-contact, though not a complete shut down like some other folks.

I've gotten better at it over the years- I read a ridiculous amount of etiquette books, though many were outdated. I learned tricks to make it seem like I was establishing eye contact by looking at people's ears or at the space right under the eye- which has happily made recognizing weariness a little easier. And thankfully, a lot of people now offer customer services/support online- in text, a medium of communication I can get.

For all my misunderstandings of non-textual communication, the written word is clearer to me. And British Comedy tends to make it across the barrier somehow. :)

I have a hard time getting the concept of hatred, and I feel guilty when I feel smug about something- even when others tell me It's rightfully so. I get distaste or dislike, and I like being on the winning side of an argument, but having those extend to the extremes just makes me uncomfortable.

tl;dr, I'm crazy in a maryad of ways, and it's a part of who I am. :) Just like being bisexual/panromantic, being female this lifetime, and my past.

And a bit of silliness and Pride- John Barrowman Sining "I Am What I Am" From La Cage Aux Folles :