Charities

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):

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

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

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

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!

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!

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

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.