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.

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.

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.

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!

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.

Negative representatoins of autism in the media

I have seen many negative representations of autistic people in the media. But lately I have found some that are far worse than those I have seen in the past.

The other day I was wandering around the net when I stumbled across a myspace page with a youtube video of a public service announcement by the group, cure autism now. This PSA was so utterly offensive to me that I just sat there with my mouth hanging open. In the begining you have a group of people each saying a portion of the following

"Every 21 minutes a child is diagnosed with autism. Autism is like this. It's like someone sneaks into your house in the middle of the night and takes your baby's mind and personality and leaves their bewildered body behind. If a child was actually being kidnapped every 21 minutes. We'd have a national emergency. We do. it's called autism."

Here is the offending . video

The only word to describe that video is dehumanizing. It makes it seem like Autistic people have no mind or personality. Anyone who has taken the time to get to know someone with Autism knows full well that we have a mind and personality. Livestock handling equipment designed by Dr.Temple Grandin is found in 2/3's of the livestock handling facilities in the US. Thats pretty impressive for someone with "no mind". If you couldn't tell I was being sarcastic.

The kidnapping theme is also present in a new campaign called the "ransom notes" campaign. This is a new campaign by the NYU Child Study Center. The campaign will be a series of ads on billboards, kiosks, magazines and online. The ads show a picture of a ransom note signed by Autism, Asperger syndrome or ADHD.

The Asperger's ad has a note that reads "We have your son. we are destroying his ability for social interaction and driving him into a life of social isolation. It's up to you now. [signed] Asperger Syndrome"

The ads for Autism and ADHD are equally as vile. You can read more about it here

We need to let people know just how offended we are by these sorts of depictions of disabilities. We need to let the people making these ads know just how offended we are. If we see the ad on a kiosk at the mall we need to notify the management of the mall about how offended we are. We should also get a petition going to get the ads removed from such places. If we see the ads in a newspaper or magazine we need to write a letter to the editor expressing or opinions of the ads. We need to educate the general public about disabilities so people can understand why we find such things so offensive.

We must not sit back idly while people without disabilities are promoting dehumanizing messages about us, just to get people to donate money to their organization.

[rant mode on]

I am sick and tired of all the pity and fear mongering used by autism groups to elicit donations. These groups aren't interested in helping us. They want to wipe us off the face of the planet. But people happily give them their money to "help" people with Autism. Supporting eugenics and genocide does NOT help us. If an organization were funding a "cure" for blackness, how many people would donate money to help "those poor people with blackness"? NO there would be a national outrage if such things were to happen. Groups like the NAACP have been fighting for years against stereotypes of african americans in the media. But stereotypes of people with Autism and other disabilities are still fair game. It's time we rise up against our oppressors. We need to make it clear to them that they can no longer exploit us for their gain. No more Jerry Lewis telethons! No more fear mongering autism PSA's! No more pitiful depictions of people with disabilities!

[we now return you to your regularly scheduled blog]

So please send a letter or email or something to the NYU Child Study Center. Their contact info is in the link above.

Because we shouldn't have to

There is a scene in xmen 2 that illustrates an issue with people with disabilities particularly those with Asperger's. Night crawler says to Mystique "They say you can imitate anyone. Even their voice" Mystique replies in the afermative to which night crawler responds. "Then why not stay in disguise all the time? You know — look like everyone else?" Mystique replies. "Because we shouldn’t have to".

Visible traits of Asperger's generally get one labeled "stupid", "lazy", "weird", and such. Generally such traits are not seen by the general public as the product of a disability. Due to the negative social repercussions of such autistic traits. Many people with Asperger's have sought to hide, eleminate, or change their traits to make them appear more normal. Also, past treatments for autism have sought to make the autistic person seem as normal as possible .The fact of the mater is, we aren't "normal". So we shouldn't have to change or hide things to approximate normalcy.

Slowly I have begun to care less about what people think about my visible autistic traits. There are those traits that I can't do much about because they are neurological. But there are those which I can change and many do. But I shouldn't have to change them in order to appear more normal.

Stimming is a great example of this. The classical autistic stims are hand/finger flapping and rocking back and forth. Stims are nothing more than "nervous habit", they just present differently than they do in neurotypicals. Additionally, a classical autistic stim may fill a need that something else can't. Many people with Asperger's have traded in their preferred stim for a more socially acceptable one. I have decided not to do that. If people think it's weird that I am flapping my hands/fingers, too bad. That said, I am still somewhat self conscious about stimming, but less so that in the past. If someone inquires about the hand flapping, I can always explain it.

I also have have motor tics. These can be as mild as some simple facial tics, to my head jerking around. There isn't much I can do to stop the tics, so there isn't any point worrying about what people are going to think about it. The anxiety and mental energy expenditure from worrying about it is not worth it.

Ultimately we should strive for a society that is more accepting of people who are different. For now visible traits of autism can have negative social repercussions. But I have decided not to to hide or change them, simply "Because we shouldn’t have to".