Autism Women’s Network

After 3 months of complete immersion, the Autism Women’s Network site is live and open to the public. I am still adding features and fixing the occasional bug here and there, but for the most part, it is done.

Autism Women's Network Website

Autism Women's Network Website

Building this site has been an amazing experience for me. I am happy to get to contribute something to the AWN, which is an awesome organization that “provides effective supports to autistic females of all ages through a sense of community, advocacy and resources”. This site is open to all supporters including men and non-autistic people.

The response has been amazing! After just 3 days, we have more than 150 registered users and over 1000 forum posts! I would like to extend a big thank you to all the beta testers and other people who have been helping to get this site up.

A large part of my obsession while working on this site has been in learning Drupal, an open source PHP/MySQL content management system and framework. I have been running a Drupal test site since 2003. About 2 times a year, I dust it off, update it, and try to love it. Usually, I end up hating it, but keep going back because of the large community that surrounds it. There could not be so much Drupal love without a reason.

I am now a Druciple. I will still use WordPress for as many sites as I can, but for larger projects, it is really nice to have the amazing power and endless flexibility of Drupal as part of my web dev arsenal. I look forward to continued work on this site and continued development with Drupal.

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Video: Autism Reality by Alex Plank

Autism Reality is a 10 minute documentary film about autism by Alex Plank. The film features interviews with Dr. Temple Grandin, Alex himself, and a handful of others including Alex’s parents.

This film shows a perspective not often seen in autism media by portraying autism as a reality which is neither good nor bad, just a different way that some people are wired.

Alex is the founder of WrongPlanet.net, one of the earliest and largest online communities for people on the autistic spectrum.

A Friend In Need

Sometimes it is hard to be an aspie. I am very lucky because no matter how hard things get sometimes, I have people who can, and do, help me out. If it weren’t for those people, especially my family and Karen, I really don’t what my life would be like now. It is likely that I would be homeless or dead, but instead, I am happy and warm.

Most people are not as lucky as me. My friend aspietalk is having a very hard time and will be homeless in a couple of weeks. She has recently started to get connected with services that may help, but the process of getting help is slow and painful. Tons of red tape and disorganization that is difficult for even the most healthy and organized of people, and seems to be purposefully impossible for people who face various challenges due to health, psychology, and/or life situation. I will not rant about that now.

I am writing this to let people know about aspietalk’s situation and give a shout out to anyone who may be able to help with a donation to help her get through this time without ending up homeless again. She has been through too much for too long and really needs the help of kind strangers right now.

Please visit her site and use the PayPal Donate button to give what you can. While you are over there, I recommend reading her posts. She has a really amazing way painting pictures of her thoughts and experiences with words.

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All Drupal All The Time – Too Bad I Can’t Breathe

Writing on the iPhone. Hard to breathe. Shaky. Strangely okay besides that. Sometimes writing helps. Been very busy lately. All Drupal all the time. Besides from the insane learning curve and non-intuitive UI, I am in awe of its power and flexibility. After more than 15 hours of video tutorials and reading tons of docs, I am finally understanding how it works and how the code is organized. I am learning while building a site for an awesome organization. Will link to it when it is done. If all goes according to plan, it will launch around Jan. 1st, 2010. Not mentioning the org. because there is a board and I don’t know if things like that have to be decided about, but if someone who knows the answer and wants to post it in the comments, go for it :) I haven’t used Drupal to build a site since version 4.1 other than keeping my test site updated. Been wanting to learn it for real for a few years so very happy to finally get around to it. Still, it makes me appreciate the simplicity and clean code of WordPress even more than I already do. Been having some small jobs besides from that.

Me & K went to Monterey for K’s 40th birthday and had an awesome time. Happy birthday K! We went to the Monterey Bay Aquarium to see the seahorse exhibit. It was amazing. We also saw lots of sharks and rays and other random sea creatures. We stayed overnight at a nice bed and breakfast and got home the next day in time to give Halloween candy to kids. Not so many kids this year.

Still hard to breathe but not so dizzy anymore. Sometimes it is kind of annoying to be me but most of the time I like it. Enough writing for now. I think it helped some.

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Letter in Response to Autism Speaks’ Exploitative Practice

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:
[Read more...]

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I’m Autistic: Another Awesome Video Response To Autism Speaks’ “I Am Autism”

Responses to the the Autism Speaks’ “I Am Autism” video have been growing quickly. Here is another awesome video response to the tune of “I Am Woman” by Helen Reddy.

More Responses:

Don’t Speak For Me

Check out this awesome response to the exceptionally horrible “I Am Autism” video by Autism Speaks. Link leads to Mike Stanton’s Action For Autism blog with video and commentary.

This video is just one part of Autism Speaks’ crusade to educate the world about how horrible autistic people are and how they will destroy the happiness of anyone who crosses their path.

If you haven’t seen the Autism Speaks video, it is exactly the same as this one except for the audio, which is almost the complete opposite. Lyrics are below.

A list of responses to the Autism Speaks video
is being compiled at I Speak of Dreams.

I… Am… Autism… Speaks…

I am Autism Speaks…

I am invisible to your children. And I will be invisible to you until it’s too late.

I know where you live. And guess what? It’s no use hiding.

I have my eyes on all of you… I am watching you all.

I am Autism Speaks.

I have no color… no religion… no morals… no love….

I speak the language of despair and disease. And with every voice I steal. I grow stronger.

I work quickly to make people believe your children are suffering worse than cancer or AIDS victims.

I am Autism Speaks.

And if you’re happily married… I’ll distroy your marriage with unattainable dreams and broken promises.

Your money will fall into my hands… And I will bankrupt you… And pay myself hundreds of thousands of dollars a year.

I don’t sleep… And I’ll make sure you don’t either.

I will make it virtually impossible for you to leave your home without feeling the shame of diseased children.

I am Autism Speaks.

You have no defense against me…

Your advocates don’t have the money to fight me. And I relish your poverty.

I will make everyone think you and your children are diseased and disordered. And then… Turn on them.

I am Autism Speaks.

I have no interest in right or wrong.

I derive great pleasure out of your loneliness.

I will take away your hope.

I will rob you of your children and of your dreams.

I will make sure you will cry everyday.

You will wonder who will look after your children when you die.

And the Truth is… I… Do… Not… Care…

I am Autism Speaks.

And you are scared…

And you should be.

I am Autism Speaks.

You ignored me… And that was a Big mistake.

I am Autism Speaks…

And I speak in voices stolen from your children.

I am Autism Speaks.

Join the Protesting Autism Speaks “I am Autism” Video group on Facebook:

Don't Speak For Me Facebook Group - Protesting Autism Speaks

From Bev @ Asperger Square 8:

I Am Autism Speaks

Thanks to Turner & Kowalski for stirring things up.

Through My Eyes, sung by Thanh Bui

Through My Eyes, sung by Thanh Bui is an attempt to help people get a handle on what it’s like to live with an autism spectrum disorder.

Ordinarily, a song this sweet would make me gag. I admit that in order to listen to it all the way through, my brain started translating it into a thrashier version of itself (in classic rock power ballad style). Personal musical tastes aside, I really liked this song and Thanh Bui’s beautiful voice brought me out of the thrash from time to time.

Thanks to Sharon for the link :)

Music by Fiona Johnson. Words by Valerie Foley. Inspiration from the lives of those close to us who live with an ASD.

It will be available for download on iTunes soon. 

All proceeds to Autism Spectrum Australia (Aspect)

Autism Myths #2 and #10

This post was inspired by an article written by Rachel Cohen-Rottenberg and published on The Commons. More of Rachel’s writing can be found on her blog, Asperger Journeys.

Rachel’s website includes a list of 100 Myths about Autism, and her article focuses on ten of those. After finishing the article, I found my thoughts lingering on myths #2 and #10.

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It’s only recently that I’ve realized that most people do not experience the visual world with the same intensity that I do.

- Rachel Cohen-Rottenberg

I have been misdiagnosed throughout my life. All or most of these diagnoses were mental illnesses (i.e. shizophrenia, depression, anxiety, etc.). No idea if these were also correct to some degree or other, but finding out what is really going on has been a pretty big thing for me.

Treatment is the same for most of these things, so there were no major changes as far as meds go, but finding other people like me has been a major event in my life. I feel much less alone, have been exposed to massive amounts of information and resources, and finally have a name for “what is wrong with me”. Very helpful when telling other people. Much better than what I used to tell them: “My brain doesn’t work right”, “I hear screaming in my head”, “I don’t think right”, “I am crazy”.

I am not really sure how much it matters to other people whether it is psychological or neurological. Not even sure it matters to me, except that I am a stickler for accuracy. Honestly, I don’t really know what the difference is between psychological and neurological conditions affecting the brain. My guess is that for psychological things, it is an outside factor affecting the way the brain works, and for neurological things, it is the brain itself causing the ‘problem’. Any of you docs or social workers out there know the answer?

Rachel’s description of sensory processing is exactly the same as the way I experience it. I have personally never found the words to describe it so well, but she and many other people have, allowing me to share this description with others in a way that I could not before.

I think all of these first-hand descriptions and corroborations are very important in this time where autism awareness is growing by leaps and bounds, thanks to the internet and other media. The autistic spectrum is large and the range of people’s experiences varies greatly, but the amount of similarities in thought processes, perception, and experience is definitely worth documenting!

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, “The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

- Rachel Cohen-Rottenberg

This is probably the most controversial myth of all. I am not even sure how I feel about it myself. As a generalization, I do not agree with it at all. Politically, I think it is a very dangerous statement. Personally, I wonder about it.

There are times in my life when I would rather have been dead than autistic. Of course at the time, I did not think of it in those terms, but I did think of it in terms of that bad things happened to me because I was different from everyone else and could not figure out how to ‘do things right’. The only way to make things better was to not exist at all. Luckily, my young black and white brain was more concerned with not making my family sad than with feeling better.

As an adult who is no longer in such constant pain, I now also realize that my best skills and attributes are most likely also due to being autistic. Of course there are many things that shape a person, but on a very basic level, I believe that being autistic has been a huge factor in becoming the person I am, not only due to genetic or physiological differences, but also due to the way people have treated me over the years as a direct result of my differences, and by my reactions to that treatment.

As a result of my own experiences, I am not always sure that I don’t want to be cured. For the most part, after several years of learning and trying to accept this, I am usually happy to be how I am. If I were ‘cured’, I would lose the best parts of myself along with the worst. My life would be easier for sure, but the price of losing myself is too high of a cost to pay.

My “choice” of not wanting to be cured has much to do with the fact that I have a loving supportive partner and family, and that I am able to gradually build my business and work for myself. As much as I feel that it is wrong to say that autism is a disease that needs to be cured, I also think that a cure might benefit many autistic people, regardless of how “functional” they are. I know those are fighting words in some circles, but I really wish they weren’t.

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Leaving Oakland?

K and LB @ Slainte Pub in  Baltimore

K and LB @ Slainte Pub in Baltimore

Me and K spent the past week in Baltimore and Florida and had a great time. We want to move to Baltimore, but we can’t. It sucks. We decided we wanted to move a few weeks before the economy crashed. Things looked pretty good for us then. Now we are stuck here for what could be a long time.

We both love Oakland and the Bay Area, but it is time to go. About 5 years ago, we visited Baltimore and came home thinking about moving there to help out K’s folks with stuff that they have a hard time doing, but that would be easy for us to do. They told us we shouldn’t move because of them, and we didn’t. In the 5 years since, we have accumulated many more reasons to move there and fewer reasons to stay.

I have 2 beautiful nieces now that I didn’t have then, Hannah (3) and Abilgail (10 months). I want to see them grow up. I want to know them. I would also like to see the rest of my family more often. Even though they are in Florida, I would still see them way more often than I do now. Florida is a long drive or short plane ride away from Baltimore. Even if I am having a hard time traveling, I could get there. When my grandma was sick and moved to Florida to be closer to family, I wanted to see her so bad. I wanted it worse than anything, but I couldn’t get there. Then she died. I missed my chance forever. If I had lived in Baltimore then, I could have gotten there, maybe even several times. I never want anything like that to happen again.

K has lots of great friends in Baltimore that she has known for many years. For some reason I find it really easy to be with them and always have a lot of fun when we visit. It is very rare that I am that comfortable around people, especially groups of people. I have a couple of friends there too, including Kim who I have known for 25 years and would love to live near again. I spend most of my time here alone. Mostly by choice, but it would be nice to know that other options are available once in a while. There are options here too, but I am never organized enough to make plans and can not predict when my brain will cooperate. I suppose that will be the same wherever I am. Too bad.

Many things have to happen before we can leave. K has to take the national social work test and find a job, we need to figure out what to do with our house especially if selling it is not a viable option, and we need to do it all in a way that we end up with enough money to move and not get totally screwed if our unsold house goes without tenants for a month or more. This would be a good time to win Lotto.

It is hard to be here now. My new medicine combo is making some things much better than before, like traveling, but other things are worse again. I am very tired. My head is louder. It is easier to get out of the house than before, but only when my head is quiet. Otherwise, it is harder. Not sure I will ever find the magic combo of drugs/doses/whatever. Glad to have ones that help as much as they do though. I hope we can get out of here before too long. I don’t know if things will be different there, but there is only one way to find out. It will be very sad to leave our house. We both love it a lot. Wish we could move it across country.

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