May 10, 2005
CNN Presents...

Sue Rubin is the kind of person you want to hang out with. She's funny. She's smart. And she's had more than her share of challenges in her life. She's afraid to walk over thresholds in doorways, she always carries a pair of plastic spoons in her hand, and she on occasion has wild outbursts.

Susie - as her parents call her - narrates a film that will premier on CNN on May 22nd. She's written the narration herself, and the honesty and raw emotion of how the world looks through her eyes is riveting.

The fact that CNN has devoted an hour of prime time to Susie Rubin's story is extraordinary. She's not famous. She hasn't been the victim of a crime. What is important about her is her point of view.

Oh, did i mention that Susie wrote the narration, but didn't record the voice for the film? That's because she doesn't speak very well. In fact, she mostly communicates with a keyboard.

Susie has Autism. And this is her World.

top.autism.world.jpg The film is called "Autism is a World" - and it is presented as part of the series CNN Presents, Sunday May 22nd at 8pm.

I had a chance to go to an advance screening and it's an exciting peek at some of the new voices coming out of CNN.

The film is directed by Gerardine Wurzburg, and Jennifer Hyde was the Supervising Producer for the program. CNN US President Jon Klein introduced the screening - reminding audience members that he began his career in Documentary, and CNN's Sid Bedingfield moderated a remarkable question and answer period with Susie after the screening.

But - back to the movie:

Autism is a disease that is difficult to diagnose, and until recently it was assumed that most if not all autistics were mentally retarded. She was diagnosed and treated as mentally retarded until she was 13. Her mother - an amazing force of nature - then began to use facilitated communication (aids with a keyboard) and within MONTHS she was communicating in full sentences. As Susie explains it "I woke up." Wow.

The compassion of the filmmaker, the intimacy of the camera, and the voice of the film make this a surprisingly engaging and hypnotic experience. I say surprising, because the experience is very much like the one you might have if you saw Susie on the street.

Her appearance would catch your eye - but then you might look away. You might make assumptions about who she is, what she's thinking - or if she's thinking in the way you and I do.

The film invites you to look closely, to look beyond the surface, and listen to her voice. The fact that she kicked my but on the SAT's, graduated high school with a 9.8 gpa, and and can hunt and peck a searingly funny one-liner are all part of the journey that reveals itself. (ok, didn't just kick my but - but sitting in the audience, i felt like her grades - against such odds - was a personal charge to make sure i was using my gifts of speech and a health body as effectively as she has used her challenged frame.)

Autism is a World premieres on CNN Presents Sunday, May 22nd at 8pm ET

Watch it.

CREDITS:

Lensed in and around Whittier, CA where Sue makes her home, Autism Is A World was produced by State of the Art, Inc. and Producer/Director Gerardine Wurzburg, Co-Producer Douglas Biklen, Associate Producer Elissa Ewalt, Supervising Producer Jennifer Hyde, Executive Director Jody Gottlieb, Managing Editor Kathy Slobogin and Executive Producer Sid Bedingfield.

Posted by steve.rosenbaum at 06:19PM on May 10, 2005
Comments

I just watched it and I can only say I am shocked and humbled. I think we toss the word "hero" around a little loosely, but there is no other word to describe this amazingly courageous woman. She may singlehandedly change the way that we look at autistic people and possibly just about anyone else who cannot communicate as easily as most of us take for granted. I am ashamed to have accepted the commonly held belief that most autistic people are mentally retarded-never again! I am a true admirer!!!

Autism is not a disease. It is a variously arrayed constellation of traits that stand out as "not normal" because they arise from a brain that is "wired" somewhat differently from the norm. Autistics vary widely. Communication problems experienced by autistics vary widely.

I am glad to see more public attention to the existence of autistic adults. Until recently, anyone scanning the media would have to assume that autistics all die at the age of 18. Not so. Most of us live a normal life span.

To those looking for more information on autistic adults, I would recommend, in addition to my own web site, http://www.autistics.org and www.neurodiversity.com

I have ordered the DVD of "Autism is a World" I don't have cable tv, so I will have to wait to see it.

Sue Rubin is a wonderful example of Sue Rubin. We shouldn't hold her up as an example of how it is to be autistic. Just as we shouldn't hold her up as an example of what a woman is, she is one kind of woman.

I am thrilled that facilitated communication is going to get another chance in shcools and therapy (I hope).

I think that if Sue Rubin had had exposure to some kind of facilitated communication at an earlier age she might not have been so "aggressive" or otherwise difficult to live with.

Her story makes a good point that autistics are learning things even if they don't appear to be.

I don't agree with her take on high-functioning vs. low functioning, with low functioning people needing a cure, etc.

Amanda Baggs has a similar functioning profile to Sue Rubin (you can read AB's essays on autistics.org), she was diagnosed as "low functioning" and as for the ability to take care of herself she is still low functiong, but her writing is as clear and intelligent as Sue Rubin's.

Amanda Baggs taught me to see that "low functioning" does not equal "pathetic" and that what people like her need is support and understanding NOT a cure.

If you offered her a cure today, she would not take it.

Neither would I.

I have Asperger's syndrome/high functioning autism. I have an adult child who is "middle functioning", who can not live on his/her own, but has always been able to speak normally. My child doesn't need a cure, either.

I love my child just as is.

Camille

I teach autistic children at the elementary level. I missed the program but would love a copy of the video. How do I order one.

I am an autistic university student and I had mixed feelings about the documentary. On one hand, I am glad the documentary showed people that just because an autistic person has uncommon body language and behavior, that they are not necessarily "retarded" as they often come across to the general public. Other students on campus call me "retard" and get angry at me because of my unusual body language and my inability to walk through crowded hallways and cross streets of bicycle traffic. I almost wish I had a sign on my back that read, "I am autistic. That means I may look 'retarded' even though I have an IQ in the genius range. It means I may have difficulty with walking in halls without getting in your way. This might irritate you, but you only have to deal with it for a few seconds. I have to live with it for the rest of my life." I think things might be easier if the general public was more educated about autism and I am glad documentaries like this may help to educate people.

However, at the same time, I am deeply concered about some of the things Sue said in the documentary. There was one part where she described herself as being a "non-person" before learning to communicate. I get the impression that people think a non-verbal autistic person is just a body that moves and makes noises and that there is no person on the inside. I know that this cannot be the truth and I worry that when Sue called herself a "non-person" that she will reinforce this misconception.

I to wanted to say that I to can be to relate to Sues feeling of being a non person as in my whole life felt like illusion because people treated me as if were of one. So can relate to Sue's thinking to that one

I to also be of happy that more and more are finding outlets to the communication barrier and showing the world we are a thinking being that isnot intellectually impaired even if we to appear to be.

I to be dx autistic but say of self to be of HFA this to me does not reflect of my intellect but my self help and life skills meaning I to have some that are fair to survive the world in most cases but does not equate I to be without challenges. Most of my skills to be to comed later in life not early. I to gained most after mid 30's of age. I to think many assume LF means the person has low intellect and this is not so. they are just more challenged in self care and life skills.

I to think some are of taking sue's words and adding thems own thinking to the words and yet not have true cognitions to what Sue is maybe trying to express from when she to say of non person. I to think she is not saying she is one who felt as if she were a souless person but a person who was not validated or understood which to many if you are of non verbal or low verbal they assume you are a non thinking person and Sue maybe was trying to say this is why she felt as a non person because the world around her did not understand or validate her as being a real , whole , thinking person.
Sondra

I really enjoyed Sue's story. I have a better understanding that gives me such hope and comfort. My four year old son, A.J., is autistic. I sometimes watch him being a busy bee and wonder what he might be thinking. I always knew that he was very smart, even at age four, and I suspect he was intelligent in ways I couldnt begin to imagine.

Watching this special, and numerous other stories here and there about autism, has really educated me. I understand him so much better now.

I understand Susie's story is just one testimony and that everyone is different. However, I believe that it opens the door to a new way people will perceive autistic personalities.

Bravo to all that put the information out there.

I loved Susie's story. I am a teacher of elementary age students with autism so I had a special interest in this program. None of my students use "facilitated communication" but I do have one student who communicates using PECS (Picture Exchange Communication System). My students fascinate me each day and watching how quickly they learn is amazing. One thing Susie said at the end of the film really stood out to me and I felt was really important. I don't remember her exact words but it was something along the lines of "autism will be with me for the rest of my life". I think this is a very important statement, as there is the misconception that autism can be "cured" through therapy, etc. Working in special education, I see many parents who think it is only a temporary condition and the child will "grow out of it". Especially with all of the new therapies that are being discussed in the media. I hope that by Susie saying this, that it might help some people to understand that, although autism is a life-long condition, it is not a terrible disease.

I enjoyed hearing from Susie her experience and realized it is not too late to get a communication system in place for our son (13) who is considered verbal, but is not able to provide much beyond a yes, no or phrase about Barney, what he ate for dinner. It is difficult to get beyond the same routine "interaction" that is somewhat scripted and patterned. I know that our son has so much to share, but is just not able to do so verbally.

Emotioanlly driven social movements can be a scary thing. Are we forgetting that FC was rejected by science? http://skepdic.com/facilcom.html

I watched the airing tonight. I wish I had a tenth of Susie's courage, strength and desire in my life. She is one of Gods most special treasures and a giant inspiration for me. I want to thank the folks that have helped her all throughout her journey in this complicated world. Susie this is for you especially, I admire your courage and would love to meet you oneday to express my sincere admiration for you and your fight to excel in life and your desire to help others with their fight to achieve their goals.

All my best wishes for you,

Ernie Smith
Charleston,SC

I live in Doha, Qatar and want to purchase the dvd, "Autism is a world!" Where would I purchase it?

I was in awe after watching this wonderful documentary! I have a friend whose 14 yr. old daughter has some identcal characteristics and was diagnosed in early years as mentally retarded, then with cerebal palsey, which was later found not to be true. It is bizarre some of the things mentioned are as if describing my friend's "Sarah". I did not record the program, but am anxious for her to see it... where/how do I go about purchasing a dvd?!!

I enjoyed the documentary so much, I've watched it 3 times.

Sue has inspired me to become involved with summer school programs working with elementary-aged, autistic kids.

It's very inspirational. My son could have had the chance to live a life of his choice and enjoyed it if it weren't for the pressure we were in to make him 'normal' using psychiatric drugs. I will include this site on his.
http://www.geocities.com/dansweb2000/

How can I order a DVD of "Autism is just a word"?
Thank you........

I thought it was an amazing movie, and Sue is a very inspirational person. I wish her the best in life and hope only good thing will continue to go her way.

Truly a moving and rivoting piece of work.

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