Tuesday, December 9, 2008

The paradox of existence

A friend of mine pointed me to this post by Amanda Baggs. Her post got me thinking about how we can exist and not exist, for the very same reasons.

As a kid I was taken to white coats of various stripes to try to figure out what was wrong with me. At the time the diagnosis of Asperger's wasn't available. So the doctors didn't have a convenient label to explain my behaviors and things. The best the doctors could tell my parents was that I wasn't normal, but I wasn't abnormal. So to the doctors, I didn't exist.

In school those very same behaviors led to me being the target of bulling. “Hey look it's the stupid fat kid. Everyone grab your torches and pitchforks.” So in a twisted sort of way, I existed. Although I existed as the kid to be picked on and made fun of. Perhaps school would have gone more smoothly had I not existed.

As an adult, if people want to know about my disability and how it affects me, I exist. If I express my opinions on cures and treatments I don't exist because I don't have “real autism”.

If there is profit to be made, we exist. As long as we are lining the pockets of the doctors and pharmaceutical companies, we exist. If my parents are shelling out $100 an hour to my therapist, I exist.

When we cost money, we don't exist. When I applied for SSDI I was denied because I wasn't disabled prior to the age of 22. Even though I am on SSI for Asperger's, which you can't get as an adult.

So we can both exist and not exit, for the very same reasons.

Thursday, October 9, 2008

Autism conspiracy theories...some people have their foil hat on a bit to tight

As I was poking around the net I ran across this blog by Fore Sam entitled Hating Autism. This guy is something else. He is a firm believer in the idea that mercury causes autism. I understand that many people believe that, so I can excuse that to some degree. But this guy takes that far off into conspiracy theory land.

He seems to think that mercury was introduced as a vaccine preservative in order to dumb down the American people. He doesn't end there. He also thinks there is a neurdiversity conspiracy out there. He also is a firm believer that Amanda Baggs is a fraud working on behalf of "Neurodiversity"(note capital N) and the drug companies. What makes me scratch my head is how Amanda's message benefits drug companies. Drug companies don't want people to be told that their kids are fine the way they are, just different. No, they want people to get the message that their kids are broken and they have just the thing to fix them.

This guy also thinks that any autistic person who refuses a cure is insane. In a comment on one of his blog entries he says "There aren't any sane autistic people who disagree with me. The sane ones want to be cured." Then I guess this makes a certified whack job because I don't want a cure.

I swear some people have their foil hat on a little to tight.

Tuesday, September 2, 2008

Assistive tech update

So I finally got around to learning some python not to long ago. My python skills are still pretty basic. Hopefully I can get good enough with it to crank out some text to speech software for autistics. The software will probably end up being open source.

On the hardware side of things. Once I can afford it, I want to get an Asus EEE PC. Those are small enough that they might make good text to speech devices. Also, the newest flavor can apparently run for 5 to 7 hours. The other thing I want to look at is a PDA that can run linux. That would be sweet. Although a small laptop would be more convenient for entering text. Inputting text on my Palm PDA is a bit of a pain.

Thats about it. I will keep you updated.

Monday, September 1, 2008

It's that time of the year folks. It's "lets pity those poor unfortunate cripple kids day".....err the Jerry Lewis MDA telethon. So get get out your credit cards to help pay the high priced salaries of the executives at the MDA.... I mean, those poor children suffering from muscular dystrophy. Seriously though. The MDA, their telethon and Jerry Lewis can all burn in hell. For years disability activists have been complaining about how the telethon is demeaning to people with disabilities. I personally haven't ever seen an MDA telethon. But, I plan on watching it this year. I will probably write a blog about it.

Thursday, August 7, 2008

Update on assistive tech for autism

Recently I switched to using Linux. I currently use OpenSuse Linux, I am also going to be installing Ubuntu Linux on my laptop. So I am looking at linux that as the basis for assistive tech software for autistics. It's free (as in freedom) and many distributions are available at no cost. The XO laptop seems like a good platform for assistive tech for autistics (particularly kids). Unfortunately my programming skills are not very good. I plan on playing around with the python programming language. My first project will probably be some text to speech software for autistics. It will run on linux using the festival text to speech engine. Once I get something done with that, I will post an update here.

Saturday, June 28, 2008

Adventures in Autism 3

I just whipped up another Adventures in Autism Comic. It's based on the experience of a guy from my Aspergers group.

Here is the new strip

Autism comic strip

I have started up a comic strip called "Adventures in Autism". It centers around the (mis)adventures of Adam Aspie. The content of the strip is based on my own experience and that of other people with Aspergers/Autism. I created it using strip creator. You should check it out.

Here are the first 2 I have created. There is a slight typo on the first comic. Unfortunately I can't edit it unless I donate money to strip creator. Once I do that I will fix it.

Comic one

Comic two

Let me know what you think. Hopefully this will be an ongoing comic and I will update it regularly.

Wednesday, April 2, 2008

vaccines and autism

I had written a post about why people latch on to external causes for autism. I have taken some time to think about the issue of vaccines and autism. So here are where my thoughts stand now. There might be some kind of link between autism and mercury and other environmental contaminants. But I still believe that autism is mostly genetic. Also, if kids receiving mercury containing vaccines exhibit symptoms of autism, it doesn't mean they have autism. All it means is that they have symptoms related to mercury toxicity. There are other conditions out there that have similar symptomatology. Unfortunately autism is diagnosed on symptomatology. With other conditions a doctor would say "you have X symptoms so I think you may have Y. So lets run some tests to see if you have Y". If the person turns out not to have Y, then they run tests to see if they have Z. But you can't currently diagnose autism based on blood tests and brain scans. So there isn't a good way to separate genetic autism from mercury toxicity.

Additionally, many of the parents who blame the vaccines may not have noticed autistic symptoms early on. Lack of verbal speech is a big cue for most people that something is going on. If the child is at an age where most children don't speak, then the parent may overlook or not notice the more subtle symptoms. This is especially true if they don't have a neurotypical child to compare to. There used to be a video on YouTube talking about a court case where a mother was suing because vaccines cause her childs autism. She had some pre-vaccine video of her child to show that she was fine prior to being vaccinated. They had an autism expert examine the video. He was able to pick up symptoms of autism from the video. So clearly, in this case anyway, the child was autistic PRIOR to being vaccinated. The mother just never noticed that anything was going on. Now it may be possible that the vaccines did do something. But they certainly didn't make the kid autistic.

All that being said. I am by no means against removing mercury form vaccines or changing vaccine dosage schedules. But I am concerned about people being afraid to vaccinate their children due to all the hysteria surrounding the issue. Even if vaccines can cause autism, autism wont kill you. Diseases CAN kill you. I personally think it's better to have an autistic child than a dead child. Unfortunately some people don't see it that way. They would rather put their child at risk for developing a potentially deadly disease, than risk the possibility of their child being autistic. They seem to be implying that autism is worse than dying of a deadly disease. I would be very upset/angry if I found out that a child died from a preventable illness because the parents refused vaccination because they were afraid of their kid becoming autistic.

So I urge parents to continue to vaccinate your kids. Even if their is a link between autism and vaccines, don't buy into all the hysteria and put your kids life at risk.

verbal communications difficulties and assistive technology update

I had written a blog about assistive technology for verbal communications difficulties. Here is an update on my project as well as some real world experience I have gotten with my devices.

As I said in my previous post on the subject, I started playing around with text to speech software on my PDA. I recently upgraded my PDA to the palm zire 72. It has a better speaker than my old PDA. The sound is louder, unfortunately the volume isn't high enough for some situations. So I ended up getting these(the ones on the right) small battery powered speakers to use. I picked them up at biglots for $10. The sound quality and volume on the speakers is wonderful. The only real downside is the size and configuration of the speakers. I ended up putting a strip of velcro on the back of the speakers and the back of my leather PDA case. The setup works, but is a little cumbersome. I am tempted to take the speakers apart and repackage them with only one speaker rather than 2. This shouldn't be to hard to do since I know my way around a soldering iron and such. But, one of my goals with this project is to come up with a configuration that is reasonably cheap and easy to implement. Many people may not feel comfortable (or have the knowledge/skill) taking apart electronic gizmos.

So my next task is to find speakers that work well right out of the package. So far I have a few in mind to try out. The speakers on the left on the above linked photo, seem worth a shot. They have them at wallgreens for $10. I also, found this mini speaker. I am not sure how good the sound output is on it, but the size and configuration is right on, and at $10 the price is right. I have also seen some cheap cylindrical speakers that plug right into the headphone jack. I will probably give those a try too.

I have gotten some real world experience using my PDA as a communications device. The main problem is imputing text on the fly. It's a bit slow. For this reason I have some bits of text pre-written and ready to go. I have one blurb of text that explains that I have autism and am having difficulties with verbal speech. This way the person knows that I will be communicating with my PDA. Although I can't input text as fast as I can by typing, the portability of the setup makes up for it. I always carry my PDA with me, so I now always have a way to communicate when I have difficulties with verbal speech.

In addition to my PDA I have also been playing around with text to speech on my laptop. I downloaded ReadPlease free text to speech software. The software works quite well. The voice is clear and you can adjust the speed at which it speaks. I also like the fact that you can download voices in other languages. I am bilingual (English/Spanish), so I downloaded some voices in Spanish. For free software it is quite good and worth checking out. It might also be useful for people with reading difficulties.

I recently had a chance to use the text to speech software in the real world. I had an appointment at the social security office to apply for social security disability. I figured that my anxiety would be elevated and I tend to have speech problems when under anxiety, so I took my laptop with me. First thing I did when I sat down to talk with the person, was to ask if it was ok if I turned on my laptop. The speakers on my laptop suck, so I used my portable speakers that I mentioned above. I am so glad I had my laptop with me. Initially I was able to answer the questions just fine using verbal speech. But at one point I was asked a question that made my anxiety rise. As I started to answer I began to have great difficulties getting the words out, so I started typing. Everything worked smoothly. The only real annoyance was early on before I started using my laptop, the social security person made some comment about how I was able to speak just fine. Well, yea I can speak just fine most of the time. But I can't do that all of the time, other wise I wouldn't have had my laptop with me! GRRR. Stupid people! This makes me think of a YouTube video I saw. It was a video by a woman with bad arthritis in both knees. She was talking about how she uses a wheelchair. She doesn't need it all the time, just mainly for longer distances. In the video she talked about how she was going to go to her brothers graduation. The even would be in 2 different buildings about 2 blocks away. So she would need her chair. But, she was embarrassed about having to bring her chair because people give her looks when they see her get out of the chair and start walking. People need to realize that some of us who use assistance devices don't need them all the time. It just irritates me how ignorant people can be regarding disabilities. People need to be better educated on the subject so we wont have to deal with stupid crap.

Wednesday, February 20, 2008

verbal communications difficulties and assistive technology

Lately I have been thinking about verbal communications difficulties with Asperger's. More specifically I have been thinking about my verbal communications difficulties. A while back I found a blog post. by Elmindreda about speech and Asperger's. As I was reading that I noticed similarities with speech difficulties I have. So lately I have been thinking of assistive technology that I could use when I having difficulties communicating verbally.

Although there are several commercially available devices, the ones I have seen don't seem to fit the bill. For one thing, given that I can usually communicate verbally, I would be hard pressed to get my insurance to pay for one. Also the devices I have seen seem to bulky and cumbersome for me to want to drag around with me every day. So I had to figure out some other option. I have a PDA I carry with me and use all the time. so that seemed like a good option.

I was poking around the net looking for text to speech software for my PDA. I found a few things and played around with a couple of them. Out of the ones I tried I like HipTalk the best. That website is in Spanish. To download a demo of the software click "descargar" then on the next screen go to where it says "Descargar HipTalk gratis" and click "descargar". The website says it's version 1.0 but the download will be the newest version. So far I am pretty pleased with the software. It can read off stuff in your memo pad or you can write stuff on the fly. Right now I have a few bits of text in my memo pad categorized under "speech". This way if I am having difficulties with speech I can just pull up the string of text that explains that. On top of that I have it setup so I can access the text I need just by using the buttons on the bottom of my PDA. Another really nice feature of HipTalk is the ability to adjust the speed at which the text is spoken, as well as the tone.

The only real issue I have encountered with the software is that the website for it is no longer around, so I can't register the software. Registering would be nice because it would get rid of the intro screen and allow me to speak more than 500 characters.

The only other issue is that my palm zire 21 has a crappy speaker on it. So the speech isn't as loud as I would like. I am going to be upgrading my PDA soon, so hopefully the next one will have a better speaker. Otherwise I will have to come up with some sort of external speaker setup. Hopefully I will work something out. For now at least I have something.

Another use of of this software is for my reading difficulties. I can just pop in my headphones and have my PDA read something to me.

As I make more progress on this project I will make more updates.

Saturday, February 2, 2008

Why people latch on to external causes for autism.

The other day I was looking at the google ads on my blog and saw one that caught my eye. It was for some lawyer who is suing some drug company because their medication used by pregnant women, causes autism. So I started thinking about why people are quick to latch on to things like this or mercury as the causes of autism.

Fundamentally our society is based around ism's, Racism, classism, sexism ETC. Eugenics ties into this as well. There seems to be an undercurrent of Eugenics in our society. Most people would probably flat out deny that they support Eugenics, but I feel that on some level many people do support Eugenics or eugenical ideas. This I feel may be part of the reason people latch on to things like mercury as a cause of autism

If there is a genetic link with autism then it implies a few things. It implies that not only is your kid defective, but you are too. Not only that, you are responsible for making your kid defective. It's much safer to blame the nasty drug complanies for poisoning your kids than to accept the fact that you might not be as geneticaly pure as you once thought. On top of that, then you have to worry about the possibility of other kids you may want to have, being born autistic. And what about your "normal" children? Might they pass on the autism genes and spawn more genetic abominations? This may be to much for some people to want to wrap their heads around.

As far as the autistic children go. People don't want to have to think about autistic kids becoming autistic adults. People don't want to have to think about their kid using diapers well into their 20's and beyond. They don't want to think about the prospects of missing out on senior prom, college graduation, the wedding, the grand kids. No, it's far simpler to think "I'll just take my kid to a chelation doctor and he will be normal."

Well, the reality is that your child will probably be autistic for life. I don't see any possibility of "overcoming" my autism, nor do I want to. So get your your head out of the sand and accept the possibility that your child's autism may in fact be genetic. Accept the fact that your child may never "overcome" autism and may be autistic for life.

Friday, January 25, 2008

Working while on SSI. What a pain in the ass

This blog entry was inspired by this blog entry.

On the one hand the social security administration wants people to get off SSI and back to work. On the other hand, there are so many hassles and red tape that they make it hard to get to work. Here is the kind of crap I have to deal with

I work a 12 hour a week job at Target stocking the shelves. I have to report my income to the social security administration. They then use that income to determine my SSI payment. My SSI payment is based on my income TWO MONTHS AGO. Sometimes at work we finish early so I end up leaving work at 8am instead of the usual 9am. I also sometimes call in sick to work because of my disability. So if I am getting an SSI payment based on 12 hours a weeks pay, and I end up working fewer hours this month, you do the math. On top of that, if my current SSI payment is greater than it should be based on my current months earning, then I have an overpayment. They then cut back subsequent SSI payments to pay back the overpayment. At my job I get payed every 2 weeks. So sometimes I get 3 paychecks per month. For example. Next month I will get 3 paychecks. But, my last paycheck will be on the LAST day of the month. But, since my SSI payment will not be what it should be, based on that months earning, I will get an overpayment. Currently they are withholding some of my SSI payments due to an overpayment. The overpayment was because I got 3 paychecks that month. So after February I will have my SSI cut back to cover 2 overpayments. I could try and argue with them that I can't afford to pay back the overpayment. But I don't know if I want to bother with the hassles and red tape associated with that.

Given the difficulties I face at my job I have been tempted to quit. But, I can't. If I tell them that I quit my job, will they then pay me my full SSI payment next month? I don't know. But my guess is, probably not. Especially since I have those overpayments. Additionaly, if I do quit. I would probably have to jump through fiery hoops to demonstrate to them that I quit because of my disability.

Some people seem to think that being on SSI is great. It's free money after all. Well let me tell you something, the money isn't free. There are whole lot of hassles and red tape that come along with it. If you can get by without SSI, I would do that.

I am not normal

It seems that some people with disabilities want people see them as normal. They want to be seen as normal people who just do things differently then everyone else. I for one am NOT normal. In this case I am defining normal as what most people in society are. In our society most people are Neurotypical (NT), that is someone who isn't autistic. My ways of experiencing the world are not the norm. My body language and facial expressions are not the norm. My behaviors are not the norm. I am not a normal person and I don't wish to be seen as one.

Being normal is to much hassle. Being normal requires me to do things which are abnormal for me. Being normal requires me to stop doing things which are normal for me. Being normal requires me to put forth extra effort to do things that come easily for normal people.

I am not a normal person, so don't treat me like one. Treat me like a unique individual. Take the time to get to know me. Take the time to get to know about the issues I deal with because of my disability. Don't assume that because "you read a book on asperger's" or "my friends brother has asperger's" that you know about asperger's and what I have to deal with. Most importantly, if you don't know, ASK!

I am not normal. I never have been and I never will be. And I am proud of it!

Thursday, January 24, 2008

The power of bitching

Here is a story relaid to me by my late grandmother. This illustrates how we can get the accommodations we need if we complain enough to the right people.

My grandmother was living in Mexico. She had to use a walker. Whenever her chauffeur would drive her to the grocery store he would park in the disabled parking spot. Unfortunately she was frequently finding the parking spot occupied by able bodied people. So she complained to the store management. The store management did something about it. If I remember right they had a chain strung across the parking spot. Whenever she needed to park there someone would come out and move the chain.

This goes to show what we can do if we bitch loudly enough at the right people. If we need some kind of accommodation we should ask for it. Now of course depending on the situation we may run into the ADA. But if we can circumvent the ADA by going directly to the right person it can sometimes be easier to get what we need.

Here is a personal example I mentioned in my previous post. I couple of years back I took a writing class at a college here. In that class we had writing assignments to do in class. Handwriting for me is a chore. So I asked the teacher if I could use my laptop and email her the assignments. She said that was fine. If I had gone through the office of students with disabilities, who knows what kind of red tape I would have had to deal with.

In general I think it's best to go directly to the person first. If you can't get your accommodations that way, then go through whatever office or agency you need to.

Wednesday, January 23, 2008

unconventional assistive devices

When most people think of assistance devices for people with disabilities they tend to think of things like wheelchairs and blind canes. There are however devices that can be useful to people with disabilities which aren't generally associated with disabilities.

A great example in my life is my PDA (personal digital assistant, palm pilot). These are very handy gadgets for people with Asperger's. We have a tendency to have difficulties with self structuring and dealing with time. The appointment book feature is quite handy for these things. I can put in my appointments along with an alarm to remind me. This can be taken a step further and used to structure your whole day. You can be sitting around playing on the computer when your PDA alarm goes off telling you it's time to do X. Unfortunately I am not to good about this last part. I aought to have alarms for things like brushing my teeth, taking out the garbage, doing my laundry ETC.

Another quite handy feature is the list feature. Sometimes tasks can be overwhelming for people with Asperger's. The solution is to break the task down into it's parts and pieces and do each one individually in sequence. With the list function I can have all the steps of a task and check them off as I do them. This way I can be sure not to forget anything. I use this when I am packing a suitcase to make sure I have packed everything.

Another device I use is my ipod. It didn't really occur to me until recently that I have been using my ipod as a disability aid. Although my social anxiety has improved quite a bit, I still have to deal with it sometimes. Particularly on a long bus rid when the bus is packed. Listening to music helps out with the anxiety. Another issue I have is auditory sensitivities. Using my ipod helps cancel out the all the background noise that bothers me.

Another device which could be useful for autistics and other people with disabilities is the XO laptop http://www.laptop.org/ This is the laptop that is being given to children in 3rd world countries. A friend of mine has one. Seeing his XO and thinking of getting one for my self got me thinking about possible disability uses for it.

Text to speech (TTS) software could allow it to function like the keyboard used by people with verbal communications difficulties. TTS can also be useful for people with a reading disability. Instead of having to struggle through some article online, you could simply have the computer read it to you.

The XO also has a chat feature where you can chat with other people using an XO. It's basically the same as instant messaging or a chat room. That could be quite useful to autistic people. I know for me interacting with text on a screen can be easier at times than face to face.

It's use as a laptop can also be quite useful. I have some fine motor control difficulties, so handwriting for me is a chore and my handwriting is sloppy as a result. A couple years back I took a writing class where we did writing assignments in class. I explained my situation to the teacher and asked if I could use my laptop and email her the assignments. She said that was fine. Had I not had a laptop I would have struggled though that class.

I am sure there are other disability application for the XO, but these are the ones that came to mind

Unconventional disability aids like those above have some advantages and disadvantages. One advantage is that since they aren't sold as disability aids they are widely available, one exception being the XO. Additionally you wont have to worry about having to pay way to much at a medical supply house. The downside is that because they aren't intended as disability aids, it would be very had to get insurance to pay for the. A friend of mine had to go through hell and high water to get medicaid to pay for his wheelchair. I can only imagine how hard it would be to get medicaid to pay for a PDA or ipod.