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Friday, September 30, 2011

Autism - Where Linux Falls Silent



In the 6 years we've been doing what we do, we've installed computers for kids from every race, origin and background.  Recently though, we found ourselves in the Pflugerville ISD Autism Resource Database.  How that happened, I haven't one clue, but we are there none the less.






The phone calls and requests for computers for Autistic kids has been overwhelming.  I don't mean "overwhelming" in an off-hand way nor am I engaging in hyperbole.  I mean the requests literally pushed us to the limit of our resources and abilities.  I've had to say no to more people in the past 15 days than I've done in the past 3 years.

Unfortunately, we've run into an inordinate amount of people who cannot or will not understand that we serve the financially disadvantaged specifically.   Some teacher(s), somewhere, sent a memo home with the kids saying that Autistic children qualify for a free computer. 

Many have been angry with us for denying them a free machine but what can I say when there is a 2010 Volvo and a 2009 Ford pickup in the driveway?  We offer to sell even financially stable people a complete computer syatem for 100.00, but many are unhappy with that.  Regardless of their positive financial circumstance, the note little Johnny sent home said it was "FREE".

We're basically out of stuff, trying to make everyone happy.

For those we could help though, it's been a reciprocal exchange.  While my educational background is in behavioral psychology, I knew little of Autism or those who care for the Autistic.  In my mind, it was some poorly defined and abstract condition that came up in the news, in overheard conversations or fund raising events.  It did not have any tangible impact on me, my organization or my psyche.

Until now.

And I'm not sure who I have the most sympathy for, the Autistic or those charged with their care.

Let me state for the record here, I am not an expert in Autism and in no way claim to be.  What I say is based on the few weeks I've been exposed to it and the reading I've done on the subject matter. 

But to my point.....

Teaching people to replace the operating system they know with one they do not has been a challenge in itself.  The resistance is often strong but the majority of the time, we are able to help our clients find their confidence and comfort level and we all move on.

However, when dealing with an Autistic child, the variables change drastically.  Autistic children, for the most part find great comfort in routine and rote.  Getting them to move on to another level of their self-care or education is one of the largest hurdles the caregiver faces.

Being as impartial and honest as I can be, the basic Linux gamesphere, to include the educational applications, fall short of the Autistic child's needs.  Of course, I understand that it was never geared for this, but I believe there needs to be some awareness of the condition and a way we, as an Open Source Community, can help.

Autistic children respond to constant and positive verbal reassurance/feedback.  The Gcompris and Childsplay packages, while approaching these needs, are not quite there.  Sure there are visual cues and cute little sound effects but it needs to go further.  One application that has received raving accolades is Zac Browser.



Zac Browser is designed for the Autistic child, it provides much of the stimuli needed for growth and learning.


It almost runs on Linux...almost.

In both Wine and the Codeweaver products it will load but ultimately, it hangs, freezes, jumps and almost always a hard shutdown is necessary to get out of it.  I've tried it on several machines with various distros and the results have all been poor.

Linux, as in many other areas, just doesn't quite measure up here, and I think, at least in this case, we can fix that.  When you are dealing with special needs children, the model of "good enough for me" won't work.  I understand the whole scratching an itch thing, but we're dealing with kids who must use Linux because that's all they can afford.  I believe we have the talent pool to at least match the proprietary apps out there.  Yeah, I'm talking sparkles, dancing ponies and rainbows... 

Autistic kids particularly have problems understanding the workings of a mouse.  Many teachers, parents and professionals fall back to touch screens to accommodate this shortcoming but in reality, it isn't addressing the issue or blazing fresh synapse trails into the new learning experience.

To me, it's a way for the caregiver, teacher or professional to "park" the kid while they go see to the other children.  Caring for a classroom full of Autistic kids is the toughest juggling task I can think of.

Number one, we cannot keep regular flat panel monitors in stock, not to mention the expense of purchasing touch screens.  Number two, let's teach the child to use a mouse.

What I would like to see is a sparkled, verbal, full screen application that teaches the child how that mouse works.  "Hey, YOU DID IT" resounds when the child gets the task right.  Or..."Not quite but close, let's try that again".

Tuxmath or Tuxtyping comes to mind in style and purpose.  I've tried to contact the developers about this several times in the past two weeks but as of yet, there has been no response.

I don't write software and I don't have time to learn how to...not at this level.  I am imploring those who have the skills to contact me and let's talk this through...at least to see what can be done or if it can be done.  Maybe it's already out there and I missed it.  If you need money to do this, I will find you a sponsor or if I can't do that, I will take on side work to pay you what I can.

What I do know is that Linux can make a difference in the life of an Autistic child and those who care for her.

I'm simply asking for a few people to help make that difference.

Edit - within 48 hours of this posting, we have a python developer and several professionals in the autism field who are being pulled together as a DevTeam.  We will publish the early team members here by mid-week.  Hopefully, we will also have the beginnings of a software map for this project...yet unnamed.

All-Righty Then

36 comments:

Anonymous said...

Please check out qimo linux for autistic children. It was developed specifically with them in mind. Their website is http://www.qimo4kids.com/ . Hopefully, this will help someone.

Czarzhan said...

Hi, Ken.
I just sent a Facebook message to John Le Sieur, a developer on the Zac Browser (I can't remember if he is the primary dev) and asked if he could contact you regarding getting Zac to work on Linux. I hope this proves fruitful
Craig

Czarzhan said...

Oh, one other thing I wanted to add: That pic of the mouthless boy is disturbing as hell.

Just sayin'

Unknown said...

Yes it is disturbing...as disturbing as being an Autistic child...as disturbing as being the caregiver for an Autistic child.

maybe some of us need to be disturbed once and a while, and I count myself at the top of that list.

Ken

Unknown said...

I also wanted to thank you for contacting John at Zac Browser...I sincerely appreciate that.

Ken

Anonymous said...

I'm a developer by day but my Linux development experience is pretty poor...so maybe it'll help get my feet wet.

However, I *really* like testing & QA, so I'll help there, with testing, test plans, and other sorts of non-developer work. Count me in.

I'm no expert on autistic kids, though - but I assume they can break things in creative ways.

(P.S. to the first poster: Ken knows all about Qimo, he's showcased it here before.)
--BK

Amenditman said...

@Czarzhan

It sure is disturbing.

Knowing Ken, that's exactly what he was aiming for.

JRaz said...

Ken best of luck on this project. I wish I was a developer to help.

Anonymous said...

Hi Ken,
Autism is a spectrum disorder. Meaning each person has more or less disability in a variety of issues. To use a crude breakdown: 1/3 are very affected, and need 24-hr care, 1/3 might be somewhat affected and be mainstreamed, and 1/3 might look 'average' -- the so-called aspergers folks who go to regular school and even college. Some kids dont/cant speak, some use technology to speak and some can speak. Another issue might be gross motor skills--and might have difficulty using a mouse. This might be useful:
http://www.squidalicious.com/2011/07/developing-apps-that-avoid-special.html
http://www.squidalicious.com/2011/09/how-ipads-can-help-children-with-autism.html

satya said...

you should be checking on this http://skid.org.in/ if you have not yet.

-Satya

Gavin said...

Just finished reading the entire Wikipedia entry for Autism:

http://en.wikipedia.org/wiki/Autism

Dense, yet interesting. But why males more often than females? Amazing how little is known about ASD. Then again, medieval dungeons were used as psychiatry wards in many countries within the last hundred years. Progress is progress, right?

Of course, with how fast technology moves, we have to ask the question: How do we reconcile the need for routine with techological advancement?

Here is hoping that someone can use Occam's Razor to cut through this one!

Czarzhan said...

My son Sabastion is eight years old, and was diagnosed as severely autistic shortly after his 2nd birthday. His sister Esme will be five next month, and is also on the spectrum, although not as severely as her brother (her official diagnosis is PDD-NOS: Progressive Developmental Delay-Not Otherwise Specified)

I was meaning to say, as a parent and caregiver for autistic kids, that pic is disturbing.

Unknown said...

@ Satya,

Skid is a good utility tool...I installed it on my computer to test it and look at the code...I have a basic understanding of Ruby.

What we are looking for is a bit more sparkle and glitz. One of the basic observations I've heard is that Linux software for the most part is dull, utility-centered and just "good enough". What we are looking for is temporal stimulation. We want to go beyond the normal plain wrapper Linux app and write one that both shines and works. Think tuxmath and tuxtyping.

http://en.wikipedia.org/wiki/Temporal_lobe

That's not saying Skid isn't a good and useful program...we just want to create an app that catches the Autistic eye and auditory sense to encourage further exploration of the app.

Ken

Unknown said...

Craig, thank you for the clarification. Being the one who led the charge on getting the name "GIMP" changed to something else, I should have been more sensitive to that in particular. My apologies for not taking that into consideration. Let me go through my library and see if I can't "ArtShop" something a bit more appropriate.

Ken

Czarzhan said...

Ken, thanks for understanding.

Craig

Gavin said...

Awww, creepy pic went away. :( Oh well, maybe you can use it for something else. Like politics or something.

Unknown said...

Hi Gavin,

No, not politics...just courtesy...it's in the remarks.

Unknown said...

Shoot Gavin, misread your comment...sorry buddy. Yeah, politics would work with that graphic in many ways.

whydoubt said...

I don't know much about and haven't had much exposure to autism (though my wife teaches kindergarten-aged girls at church and I believe one of the girls is autistic). But you have piqued my interest.

Also, I'm an experienced software developer, but that experience is not really with anything in either the educational or entertainment realm.

I can't promise anything right now, but I am definitely interested in learning more, and hope I can help out in some way.

Unknown said...

Hey Jeff, thank you.

In recent developments...which I will write about in the middle of the week, we have a guy that's interested in the project, writing it in Python. We also have some folks who work professionally with the autistic helping us do a map of the software and function.

Let me get this team going in the same direction this week and we can get something done.

Email me helios at fixedbylinux dott kommm

Gavin said...

Autism is incredibly misunderstood; and, in terms of medicine, not entirely understood at all. Even some of the things I thought were true about ASD turned out to be incorrect.

However, one thing that is true about autism is the fact that language is more difficult, for whatever reason. Is it possible to include speech recognition in your new software project? As an option for those with microphones? Or have you already thought of this?

Marco F. said...

Hi everybody.

When I dealt with this topic, almost two years ago, I got feedback that, more than Linux itself, what falls (or fell back then) silent is Free Software in general, for about the same reasons mentioned in this post (lack in applications of the specific kind of feedback needed by autistic children etc). However, Linux desktop environments as such were found useable without particular problems by the autistic child whose mother I met. You can read the details at A family’s experience with Free Software, the Internet and autism

Anonymous said...

Something you might want to consider concerning developing software for autistic children: For some of them, sparkles and sounds are a BADBADBAD thing.

Being unable to ignore a world full of irrelevant details constantly flooding ones mind can mean one needs more bling in the software to keep attention, but it can also mean more bling equals more stress.

I am "on the spectrum" myself. I remember my childhood as a time full of awful noise. Imagine trying to study at a desk in the middle of a dancefloor, and you get the idea.

One of the reasons I use Linux is that I can always remove whatever distracts me, to the point of doing file management on the command line instead of using a file manager with "annoying" icons.

Anonymous said...

I decided to look around and see what might already be available for teaching children how to work a mouse. Nothing I found deals with autistic kids but there are a couple in the Ubuntu repositories that I thought might work.

And the first poster is wrong. Qimo is not specifically meant for autistic children.

No, they won't and probably wouldn't for any child. Gamine is simply audio response to a right and left click and I couldn't see any real value in it. Pysycache is convoluted, the narrator butchers the language and it sounds to be an autobot giving the responses.

There are some online resources but I doubt the people you serve have an internet connection.

I'd be interested in seeing how this project turns out and I wish you the best of luck. There is a real need for this kind of software in Linux.

Karim Lalani said...

I am a programmer and would like to help. Or at least try. If you come across any applications that you feel could be improved to benefit these kids, I'd be more than glad to review them for possibilities. I can also work with a team of developers if one already exists for this effort. Few additional karma points here and there don't hurt anybody :)

Anonymous said...

I am not a developer, but I would love to help test any app the community develops. I am a very high functioning autistic and have struggled with this all my life - I understand a lot of what truly autistic kids must battle in their daily lives. I have been accused of having *tunnel vision* - something catches my attention I am all over it and so I grow and flourish. If it doesn't then I am not and thus feel very lost - and yes, hard to challenge myself when I prefer routine and things I know best, but I've developed a toolkit for myself that works well for me. The thing that helped me as a kid was feeling engaged, and my mother always saw to it that I was, all the time. However, in this busy world moms don't often have that kind of time to spend with their kids, an application that can engage autistic kids and help them grow beyond themselves and their small little boxed in worlds, this would be a godsend and I would love to help test such an app.

Peter Hewitt said...

Hi,

Maybe I can help. I know it's not Linux but first have a look at
link.

Then check out my activities written in Python that will run under Linux:
link

My e-mail address can be found on my homepage link - I prefer to use e-mail.

Regards ... Peter

Unknown said...

Marco, I read your article while doing some research for this project and much of what you said reinforces the things I have learned. While some of the software found in Linux may work for high-mid or high-functioning Autistic children, it won't work for the lower-functioning and we need to approach this starting at the lowest teachable level and work up.

The mouse app, if we put together a good team, will be a great stepping stone to other software centered on Autism. We hope so anyway.

Unknown said...

For some of them, sparkles and sounds are a BADBADBAD thing.

Yes, we were talked to about this today at a meeting with some professionals who specialize in Autistic children. We will get two apps out...one that more closely resembles what you would prefer and the glitzy one for others. Thank you for pointing out this important detail.

Unknown said...

Karim, email me helios at fixedbylinux dott kommm and we can talk. And thank you, we can use the help.

Ken

Unknown said...

@ Mas Geeks,

I would be more than happy to have you test and critique the application. Email me helios at fixedbylinux dott kommm and we can talk.

Ken

Unknown said...

Peter, thank you. We will be working with Sean Robinson from Britain and he is dealing with Federal Jury Duty this week so is a bit disposed for the present. Please email me helios at fixedbylinux dott kommm and we can set a start poing.

you do good work.

Ken

Anonymous said...

A glitzy and a nonglitzy version? Fantastic!

FelixTheCat said...

I know you have some experts on the panel. For the rest of us, here are some links for background.
http://www.autisable.com/736102536/autism-from-my-point-of-view/

Look at what is said about computer keys in this one:
http://www.autismtoday.com/articles/A_Boy_A_Mother.htm

And now the famous Temple Grandin (you may have seen the movie about her):
http://www.autismtoday.com/articles/An_Inside_View_of_Autism.htm

Michael Hall said...

Just to clarify the two "Anonymous" user's conflicting statements: Qimo was designed specifically for an autistic child. It was designed for *my* autistic child, in fact.

Anonymous said...

Also why aren't autistic adults considered. On irc.freenode.net there is #wrongplanet #apsietalk. With a like for rote memorization and if they can know it repetively wouldn't teaching them a commmand line interface be better than A Gui. You can still have something that looks nice but still maybe something like ncurses so that they can control with their keyboard. I am an autistic adult an I like the program ncdu and find it very intuitive. Why does bad at mouse have to mean touchscreen I feel bad for those kids being indoctrinated to use touchscreens.