Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings

[mzmolly]

This is an amazing story. I recommend watching the video as well as reading the entire piece http://abcnews.go.com/Health/Story?id=4311223&page=1">HERE


Carly Fleischman expresses feelings by typing on her laptop computer.(ABC News)

Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.

"All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash. "It was one of those moments in my career that I'll never forget."

Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself. "It feels like my legs are on fire and a million ants are crawling up my arms," Carly said through the computer. Carly writes about her frustrations with her siblings, how she understands their jokes and asks when can she go on a date.

"We were stunned," Carly's father Arthur Fleischmann said. "We realized inside was an articulate, intelligent, emotive person that we had never met. This was unbelievable because it opened up a whole new way of looking at her." This is what Carly wants people to know about autism.

[The Straight Story]

1. kick - almosted posted this earlier

amazing story

[GreenPartyVoter]

2. I've worked some with kids with various levels of autism and have often wondered what

was going on inside their minds. Unfortunately, they never had a way to tell me. I mean we had a symbols board they could point to, but it wasn't as sophisticated as this computer program so we didn't get a lot of info.

[noonwitch]

6. Sign language helps with some autistic kids

They learn enough to let you know what they need, and sometimes the learning helps them concentrate enough to learn the words that go behind it.

There's a really good book written by a woman who was diagnosed with autism. It's called Nobody, Nowhere. I forgot her name, though, but she is a very high-functioning autistic, and was able to describe her experiences in a way that anyone can relate to them.

[GreenPartyVoter]

7. I think I might have read an articel about her? Was she the one who had to lick the table before she

could eat?

[KamaAina]

15. Donna Williams

there is even a sequel, inevitably entitled "Somebody Somewhere". No, really. There is. :-)

[Torn_Scorned_Ignored]

85. Autism and Visual Thought

Dr. Grandin wrote a book titled THINKING IN PICTURES
She is autistic.
She developed a more humane method of cattle slaughtering and writes about this and her thinking process.

Check out this link, she is very intelligent and she offers great insight into autism.

THINKING IN PICTURES
Dr. Temple Grandin

http://www.grandin.com/inc/visual.thinking.html

I THINK IN PICTURES. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand, but in my job as an equipment designer for the livestock industry, visual thinking is a tremendous advantage.

[mzmolly]

95. Fascinating.

At times I wonder how many of the genius's of the past have had a "condition" that went undiagnosed?

[Sivafae]

103. Sounds a lot like synesthesia, just more complex and symbolic. EOM

[Hydra]

3. Trapped in their own bodies

And apparently the numbers are getting worse, from what I've heard.

How I long for the days when we as a society wanted to fix diseases.

[acmavm]

10. You have to get with the program. I mean, thank goodness we

solved the tragedy of ED.

[Hydra]

13. Good call! We sure know what's important!

:spray:

You know, that could be a GOP plot to win the election- making sure Monica can give Bill another BJ for the fundies to rant about!

[Feron]

36. Being unable to speak is not a tragedy.

I can imagine that it was frustrating, but fortunately technology is available to help her. Hopefully stories like these will help other nonverbal people out there.

Plus as more autistics are available to communicate perhaps people will realize that they are human beings and not people "trapped" or with "kidnapped souls". The only real tragedy is how different people are dehumanized.

Furthermore waiting for a fix all cure isn't going to improve the lives of the people already here. Pity doesn't help anyone.

[Hydra]

46. If that were all, then maybe I'd have your point of view

she's suffering in other ways because of her condition, and I'm not "waiting" for a cure or pitying her. I'm ADVOCATING for cures of all diseases and conditions that are undesirable.

The fact that this is the 21st century and we talking about how great our technology is, and we don't have a cure for this is a travesty!

[Voice for Peace]

50. it becomes a tragedy because the child is misunderstood, judged

by peers and adults, alienated. Inability to communicate + ongoing negative
feedback leads to severe cognitive depression that can take a very long time to reverse.

[lumberjack_jeff]

59. Communication is an inseparable part of being a human.

Being unable to communicate is a tragedy.

[AikidoSoul]

71. How about PREVENTING autism?

and other developmental diseases?

There are now 1 in 6 kids in the U.S. with developmental disorders.

See today's press release:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=2898387&mesg_id=2898387

[donsu]

90. agree - that is where our money should be going - not to war

the people of the US need the war money. it is our money. take our money out of "war" NOW.

[mzmolly]

93. Astounding

epidemic Aikido Soul. :(

[bagrman]

104. Read an article on Aspar tame the artifical sweetener, Poison. Can't be ruled out as

part of the problem. Along with all the other additives out there.

[apnu]

4. speechless

this is an awesome development!

:) :bounce:

[mzmolly]

9. Indeed! I bet we'll see new therapies based upon this "breakthrough"?

:hi:

[Tippy]

5. WOW.....thanks for posting.n/t

[BridgeTheGap]

8. A link to a print article on Carly

http://www.theglobeandmail.com/servlet/ArticleNews/printarticle/gam/20080218/LAUTISM18

[BridgeTheGap]

11. this reminds me of story years ago about a special ed student

with emotional behavioral disorder or oppositional deficance, something along that line. Teachers were recommending that the boy be tagged as "unteachable" and were trying to get him placed in another school. His grades were horrible and his disposition worse.
Then the school got a computer lab. This kid got on a computer and proved exactly how inteligent he really was and went on to excel in school. The computer was not an "authority figure" and therefore, not a threat to this child. One more benefit of the digital age!

[caligirl]

12. thank god the parents were stellar advocates for their child. Stunning news.

[Fleshdancer]

14. I watched this last night and was blown away!

It made me realize how little I understood about autism. I can't begin to imagine how trapped it must feel to be so aware of things and not be able to express yourself easily.

[The Backlash Cometh]

16. Wow! oh, wow, oh wow.

[KamaAina]

17. Hey, maybe someday people with autism will start posting to DU!

oh, wait a minute, that ship sailed shortly after 9/11... :hi:

We even have our own DU Group (parents and relatives, too):

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=387

[mdmc]

18. kick

thanks...

[Feron]

30. LOL

Unfortunately I've learned that people really aren't interested in what autistic people have to say.

Here are some more autistics online:
http://ballastexistenz.autistics.org/
http://www.autism-hub.co.uk/
http://www.gettingthetruthout.org/index.html
http://www.youtube.com/profile?user=christschool

[dropkickpa]

41. ballastexistenz

Is an AWESOME site. She has made me wonder at times if the whole "has to speak "normal", has to act "normal" approach to therapies are really the best thing to do in all cases. She gives a totally different perspective on this disorder, and is articulate enough to really make us be able to understand her experiences.

[otherlander]

63. Wow...

I just spent half an hour reading the stuff on that first website you linked to, and I just have to say, that's some amazing writing. I'm an Aspie, by the way. Have you ever seen this website?: http://writhesafely.wordpress.com/author/flawedplan/
It's not specifically autism-related, but it's about the rights of the mentally ill, etc. I just stumbled across it recently.

[Zhade]

76. I'm very interested in what truly autistic people have to say.

Wannabe Asperger's and anti-vaccine kooks, on the other hand, not so much.

[HughMoran]

19. Wow, thanks for posting this

I hadn't seen this story - I got choked up after reading the story and watching the video.

[KamaAina]

20. I once knew someone whose IQ was thought to be 10

until someone hooked her up with a Canon Communicator (keyboard-to-synthesized speech device).

Last I heard, she was excelling at the prestigious University of Denver, which, I need scarcely add, is usually abbreviated as DU. :-) She even got a citation from President Clinton and stuff.

[mzmolly]

44. Wow, that's amazing.

:hi:

[PA Democrat]

21. Thanks for posting this. I also have a teenage daughter with autism.

She was fortunate in that she was able to acquire pretty much age appropriate speech with years and years of therapy, but it has been a tremendous struggle for her. Stories like this are especially heartwarming because I've seen so many people write kids with autism off. I'm still crying. I wish Carly and her family all the best.

[mzmolly]

24. I can only imagine how difficult your journey has been? I'm so glad to read that

your efforts as a parent have benefited your child so deeply. :hug:

[aikoaiko]

22. This would be wonderful if true

I am a bit hesitant to be too excited since there have been some major false alarms in the past with communication breakthroughs with severely autistic. The facilitated communication debacle let a lot of people down.

http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html

But even if there were false successes in the past, these folks could be on to something important.

[mzmolly]

25. Well there is video of the child in action, so I'd say it's "true".

Please watch the video and read the story at the link I provided.

[aikoaiko]

26. Are you familiar with the facilitated communication debacle --- it looked true too.

On the video, all I saw was 2 or 3 keys pushed with two people hovering very close and its unclear whether or not there was prompting and reinforcement occurring.

Again. I am hesitant only because of past claims of breakthroughs and will enjoy reading more detailed studies of the technique.

[mzmolly]

29. I don't believe that the parents/therapists are lying.

Feel free to remain hesitant, however.

[aikoaiko]

31. The FC folks weren't lying either -- they convinced themselves it was working

I have a child in the autistic spectrum, like many in this thread, and I am not being contrary just poke you or anyone else in the eye. I'm just more cautious now about breakthroughs that show language skill performance going from 0 to 100 in a very short course of time.

[mzmolly]

40. They worked with her for years. I simply find the parents to be truthful.

I take no offense at your skepticism. It's healthy and you have more at stake than many who are encouraged.

[KamaAina]

32. The woman mentioned upthread in post #20 started out using FC

then moved on to independent typing years ago.

[aikoaiko]

35. I'm not saying kids with autism can't learn to communicate

But its usually a slow process, not something that pops out as it was described in the video new report.

How was it for your friend?

[KamaAina]

37. She was already typing independently when I met her

and I only ever even met her a few times, so I really wouldn't know.

[mzmolly]

42. Actually they didn't say it "popped up" they indicated that she was worked with for years

and began typing about how her teeth hurt one day. She typed a simple plea for help - "help teeth hurt" and her family was stunned.

[aikoaiko]

47. Well the phrase used was "words poured out of her" when they didn't realize she "had" them

The connotation was a sudden, drastic change in language performance after years of not seeing language performance.

Its hard to know because its just a new report.

[immoderate]

39. I'd like to believe this, but the video really shows nothing.

She presses two keys -- that's it. The rest is the computer voicing words on the screen, but we don't see who typed them. You never see Carly actually doing anything.

I'd need to see something more to be convinced, but I am a skeptic.

--IMM

[mzmolly]

45. I don't think that ABC addressed this story from a "let's prove it" stand point?

It might have taken her three hours to type a paragraph, for example. I'm not personally skeptical regarding this story, but I understand your apprehension.

:hi:

[immoderate]

48. I agree with you there.

They didn't claim that they were offering proof. My attitude is that I'd like to see more.

It seems that despite much study, little is known about autism, or I should more properly say that I know little about it. It's strange to me that she could have such a coherent view of her environment without evincing more ability to interact or respond directly to it. But I guess that's why it's all such a mystery.

I would like to have seen more of the process.

--IMM

[LisaL]

67. I would also like to see more of the process.

She was coming up with coherent sentences, using analogies like "ants crawling."
There are many non-autistic high schoolers who aren't going to type as good.

[PA Democrat]

27. If you watch the video, you'll see that she is typing independently.

The story did mention that Carly had gone through intensive behavioral therapy, which is the same approach we used with my daughter. It basically involves the use of positive reinforcement to teach skills that are broken down into manageable components. I think that in some kids with autism the speech centers of the brain may be more impaired but that doesn't mean that other means of communication can't be achieved. It's just so important to try to give these kids some means of communication.

[aikoaiko]

28. I can't say that the video conclusively demonstrated independent typing

But it did look promising.

[PA Democrat]

34. I'd pretty much take it to the bank that she's typing independently.

The professional, Rebecca Landa, who is interviewed for this story is someone with whom I am acquainted. She is part of a group of professionals that push for scientifically validated approaches to treating autism. If there were FC going on in this case, I can guarantee you she would have said so and would have voiced her skepticism.

[aikoaiko]

38. The Kennedy Krieger Institute is the one of the best -- I agree

And in fairness, news reports often do a poor job of relating or demonstrating scientific reports. Again, I hope its true and look forward to better demonstrations of language performance.

[blue neen]

58. I agree. Carly is typing independently.

I think if you watch her facial expressions, you can see that she is thinking of what she wants to type next.

This video should be required-viewing in schools! :hi:

[LisaL]

66. She is shown typing independently, but it's very hard for me to

understand how someone who is unable to speak can type up complete sentences with what looks to be a pretty good grammar and spelling.

[Mythsaje]

68. From what little I know of autism

the computer probably acts as a buffer between her and the rest of the world. The problem isn't so much an INABILITY to speak as an inability to make personal contact with other people, which speaking to them most certainly is. The computer acts as a buffer between her and contact/communication directly with another human being.

[LisaL]

74. Does it have to be a computer? Would she be able to write

on paper? Regardless, I personally would like to see the girl typing without people sitting next to her, and see how she does.

[doni_georgia]

88. Autistic people often lack fine motor skills allowing writing with pen and paper

That is why the school system here gives laptops to autistic kids. My son's fine motor skills are unaffected, but still he writes better on computer, because he is not having to concentrate on forming the letters. In autism there are disconnects in the brain. Tasks that a typical person can do without thought require a lot of concentration. My son does all of his school work on a lap top. It makes a huge difference.

[riderinthestorm]

23. What an inspiring story!

We need many, many more of these kinds of breakthroughs for autism. Her parents were so incredible in their support of Carly.

Just wow! K and R! I love these good news stories.

[seabeyond]

33. wow molly. that is the coolest. i can understand about the hitting cause feel like

fire or ants. it is a condition i am aware of, ... and who would have thunk, that all the person needed was for someone to firmly massage aware to get rid of that uncomfortable feeling and stoppin the self violence.

and beyond wow, for the other things in this article. to cool to know this. now i will go read the article. i was just talking about all this stuff with therapist, vp and pricipal at kids middle school, today

[lumberjack_jeff]

62. One of the things they used for my son when he was 5-7 was abrush

The para would brush his arms/back/legs and it helped to desensitize him.

I know it sounds odd, but we're happy that he'll wear jeans. :)

[mzmolly]

70. That's not odd Jeff. I understand.

I too have a child with neurological issues. Not Autism per se, but she does have sensory issues along with other "stuff". We cut the tags out of everything and she and I both wear our socks inside out at times, so I partially get it. :hi:

[sicksicksick_N_tired]

43. Touching. I believe we have much to learn about ourselves through these unique individuals.

I have a niece with a lighter touch of autism. At 5, she still has difficulty communicating per our uniform code of communication. However, she clearly demonstrates an ability to 'KNOW' any person's actual intentions and that ability is quite unnerving to many. I personally enjoy watching her call adults on their deceptions!!!

:rofl:

[NoodleyAppendage]

49. Facillitated communication? Beware of false hope...if this is the mode of communication.

Facillitated communication has been shown to be a fraud and subject to bias and suggestion (similar to using a Ouija Board).

J

[mzmolly]

51. I didn't see a mention of "facilitated communication"?

Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.

She types herself on a keyboard.

[varkam]

52. In this instance, the facilitator is the computer.

Back in the late 80's and early 90's forensic facilitated communication became a big thing for mentally challenged individuals, but it turned out that the facilitator was doing all the communicating.

To be fair, it's hard for me to see how this could be influenced by the same things that influenced facilitated communication, as this is a computer not a person (and thus not selective, not biased, etc). I think many people are simply skeptical given the appearance of similarity between this and facilitated communication. I'm mildly skeptical, though I do think if it pans out it would be extremely cool.

[mzmolly]

56. That's one way to view it I suppose? So, we're all using a form of "facilitated communication"

here at DU? ;)

[varkam]

65. Except that we can also communicate via other means eom

[pnwmom]

81. I don't see any more similarity between what she is doing

and facilitated communication than there is between what she is doing and what ANYONE does when typing out words on a laptop.

She's typing out words with her own hands, just like any of us do on the computer. I don't see the "appearance of similarity" between this and facilitated communication at all.

[varkam]

110. I posted what I posted...

before I watched the video

:hide:

[pnwmom]

78. From what I can see she's typing the letters all by herself, which is not

facilitated communication.

[demodonkey]

53. K&R for my beautiful, special, wonderful brother Paul...

Please read about him HERE and PLEASE K&R that thread on diabetes research.

http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=389x2896722

I have read that diabetes and autism actually may be related (vis a vis being some sort of autoimmune disorder.)

[mzmolly]

57. Very interesting info demodonkey.

:hi:

[pnwmom]

83. Autism is also related to a higher incidence of gluten intolerance/celiac disease,

which is also connected to a higher risk of diabetes.

I hope your brother has been tested for gluten intolerance, as gluten-free and dairy-free diets have helped reduce symptoms in SOME people on the autism spectrum.

[demodonkey]

109. Please go to the link in my post... my brother is dead from infection / diabetes.

:cry:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=2896722&mesg_id=2897249

[proud patriot]

54. I work with developmentally delayed preschoolers

some are autistic .. I will share this with coworkers .

[LaurenG]

55. Beautiful, just awsome and beautiful

:cry: and :D

[lumberjack_jeff]

60. For her, it is a breakthrough.

For the rest of us, just another tool that sometimes works.

[earth mom]

61. Thanks for the feel good story. It's sadly needed around DU more than ever now.

Crying a few happy tears here.

Go Carly! :applause:

[Left Brain]

64. I might never have read this incredible story

if it weren't for the changes the mods made to the Greatest Page.

Thank you, MzMolly, for posting it.
Thank you, DU Mods, for returning integrity to the Greatest Page.

[mzmolly]

69. I'm glad you enjoyed it.

:hi:

[bigbrother05]

72. Thanks for posting

[JosephSchmo]

73. thanks for sharing

that is very cool

[AllyCat]

75. Wow. That is really amazing! Thanks for posting.

What insight into a frustrating disease (for lack of a better way to say it).

[pnwmom]

77. The sensations she describes in her arms and legs

sound similar (though more extreme) to the nerve pain I had in my legs, which turned out to be due to gluten intolerance. I hope her family has had her checked for this, because there is research showing that people on the autism spectrum have a higher incidence of celiac disease and gluten intolerance -- and even some research showing that dairy and gluten free diets can reduce autistic symptoms.

[doni_georgia]

89. Exactly - GFCF diet is a must in my opinion

My son has been GFCF for 9 years, but recently he started having what can only be called panic attacks in the middle of the night screaming that ants were in his bed all over him. Come to find out, the cereal he has always eaten and was once GF is no longer GF. The cereal was causing the creepy crawlies at night!

[mzmolly]

96. Very interesting pnwmom.

:wow:

[jeff30997]

79. K&R.

What a great story.Very moving.Thanks for posting it mzmolly .:thumbsup:

[DUlover2909]

80. I watched the video. That's awesome!

[happygoluckytoyou]

82. autistic kids are great... bush is retarded... there is a difference

[lumberjack_jeff]

91. I know you mean well, but... n/t

[cornermouse]

84. Look up Temple Grandin for another person who recovered

from autism.

http://www.autism.org/temple/inside.html

[KamaAina]

106. One does not "recover" from autism

rather, people such as Dr. Grandin, not to mention quite a few DUers, function in society while having autism.

[cornermouse]

107. Well, on a tv interview Temple used the word "recovered"

so I'll let you argue that one with her. Fact is, like the subject of the original post, Temple has also shed light on what autism feels like.

[KamaAina]

108. Eurghh. I missed that one like Buckner.

I know a few other people who have used the "R-word", but never knew she was one of them. If I ever get to co-present with her agin, as I did in Conn. in '95, you can know I'll argue it with her! (none of her published works that I have read, up through "Animals in Translation", use it)

[Kajsa]

86. This is great news!

When communication opens up, not only is the young person able to express thoughts and feelings,
but the outside community becomes aware of who this person really is.

I just finished an assignment with severely disabled students in one of our high schools.
Many of them knew me from previous assignments so communication problems were at
a minimum.

At least half of the students could not speak.
Five of them have autism.

How I wish they ALL could have these tools to open up the lines of communication.

My son ( HS autism) was very speech delayed but can communicate well today.
It's his frustration and anxiety that gets in the way of his expressing himself.

He knows what he is thinking- he just can't put it into words.

This is a great step to open up a new world for those who can't speak.

[doni_georgia]

87. This mom of autistic son thanks you!

Thanks for posting this. My son was diagnosed with PDDNOS at the age of 2. At 3 he was completely non-verbal and displayed all the telltale signs of autism. We took him off gluten and casein and he has since been diagnosed with Asperger's Syndrome and is a very articulate young man. He is able to verbalize what happens to him when he has a dietary slip up. He has reported the same thing of feeling like there are ants all over his body. He also says he can tell when he gets something with gluten in it because his brain goes all fuzzy and he feels like he is in a long tunnel and can't get to us. The doctors say the diet doesn't matter (in addition he is on all organic food and we do no chemicals or food dyes), but he is able to tell us quite the contrary.

[mzmolly]

94. Isn't that amazing?

I wonder how many neurological conditions gluten plays a role in?

I'm glad you trusted your "gut".

:hi:

[doni_georgia]

102. My guess is quite a few

Think about the brain - it's like an engine - requiring just the right balance of chemicals to work correctly. Think of the fuel we put in our bodies - the wrong fuel for the engine can cause all sorts of disruptions - like putting diesel in a gas powered engine.

[Counciltucky]

92. Awesome!

This is a huge breakthrough. Hopefully it can help discern autism on a universal level and help get them to be able to communicate.

[flasoapbox]

97. Great post

I hope science can soon find ways to help autistic people fully integrate
as functional, working members of society. Although, it'd be nice to
find out why we seem to be having this epidemic...

[Baby Snooks]

98. A silent world..

In many ways, children with autism are forced to live in a silent world because we don't take the time to help them discover a world in which they can express themselves.

Angie Dickinson's daughter had a form of autism called Asperger's and despite it she attended a university and would have pursued a career had it not been for the physical ravages of the condition known as autism which in the end proved to be too much for her. Her suicide was a tragedy but her life in retrospect was a triumph for those living with autism. As is the life of Carly Fleishman. Two young women whose parents simply refused to believe their daughter was hopeless.

[balantz]

99. Wow!

Thank you for posting this.

K&R

[Gman]

100. Absolutely awesome

Imagine her frustration.

[proud2BlibKansan]

101. I can't help but think of facilitated communication

and the hope it brought when it was first developed.

I certainly hope this IS genuine and this girl really IS typing these thoughts. It would be fabulous if it is true.

[BoneDaddy]

105. What torture that must

be for her. Great post on hope.