Customer Reviews

Autism is a World - CNN

5 star:		(37)
4 star:		(4)
3 star:		(0)
2 star:		(3)
1 star:		(8)

 

 

For a more complete description of the story and characters of this documentary, read what other reviewers have already posted. My review isn't about the film's story, but about what the film taught me.

This documentary presents the paradox of being both deeply flawed and exceptionally gifted. It would be shallow to say that Sue Rubin is a brilliant woman trapped in a disabled woman's body. It goes beyond that. Sue's spoon fetish, her attraction to water, her speech difficulties, and her behavior all make her appear to be retarded. Some would say that these retarded tendencies mask the real Sue. That is not the case. The retarded Sue is the real Sue just as much as the intelligent Sue is the real Sue. This apparent contradiction challenges the way we view others, especially those with disabilities. It can be difficult to accept this unified duality of blemished excellence, so much so that some are disturbed by the very idea, and others doubt whether Sue is for real.

Personally, I thought it was beautiful. In the weeks since I saw the film, I have often found myself thinking about my own strengths and weaknesses in terms of the film's lessons. Sue has learned to accept her situation and herself. She grows where she can, even though there are many challenges she will never be able to overcome. She doesn't deny her struggles, nor does she pretend to like them, but she has the strength to accept them.

I'd also like to touch on facilitated communication. This documentary is NOT about facilitated communication. The film does nothing to advertise FC. It makes no suggestion that FC should be used more widely, does not assert any statistics about how effective FC may be among the autistic population, and does not imply that you ought to be using FC with your child. Yes, FC played a huge role in Sue's life, but those who fixate on FC as a myth are unable to see the film for what it really is. Those who dismiss Sue Rubin's story simply because there is a keyboard on screen are just as blind as the people who believe every jumble of letters produced by a non-verbal must be poetry. Let me repeat, this film is NOT about FC. If you've got a problem with FC, get past it long enough to figure out what else the film has to offer.

I know Sue Rubin and I have watched her move from a person who began using facilitated communication to a person who types independently, despite severe autism. Her story is not the made up wishful thinking of her parents and educators, but a real story about a real person. If you doubt Sue's proficiency and success with facilitated communication on the road to independent typing and communication, just visit her web site, email her and arrange to meet her and see for yourself. Unfortunately in the field of autism Sue's existence is very troubling to those who believe that "what you see is what you get" and that anyone who looks and acts like her must be retarded-Sue's success challenges the so called experts to look at their knowledge base and reassess what we thought we knew. The people who do not want to do that, who only want to quote from one book or article to another, tend to hide behind their so called expertise. Not one expert or professional who has met Sue has walked away with the belief that she is not who she claims to be. She has proven her proficiency to her local school district, Whittier College, her physicians, autism experts at UCI and UCLA and in Boston, and she has been an expert witness in court cases in which other people with autism have fought for their rights to communicate. Sue's story is worth hearing. It might be your child's story. If you have a child with severe autism, you owe it to yourself to hear what Sue has to say.

As a professional in the field of autism, I hope reviewers here without clinical training and education will exercise restraint in making generalizations about Sue Rubin and AAC that are unduly harsh and insensitive.

It's important to understand what augmented communication is and is not, and what is meant by the addition of having a facilitator as Sue Rubin uses. Augmented communication takes several forms; from pictures and symbols to signing to electronic devices such as keyboards or voice generators. For anyone who can't speak, these devices are effective and have been empirically validated among other disabled population studies for many years.

If the AAC user is physically unable to access a device because of motor problems- as some autism clients as well as someone with cerebral palsy or other PDDs might have - then a facilitator can help guide and direct the manual use of the AAC. This might look something like "hand-over-hand" guiding -for example, if the client's hands shake or have low motor tone.

The controversy with using a facilitator arises when the facilitator is typing or operating the device him/herself or answering questions for the client to then type in. Then, clearly the client isn't actually doing the communicating. Good facilitator training usually corrects this problem. In the case of Sue Rubin, sh is not pretending and she is -as many with autism are- of normal IQ and high intelligence.

That said, clients with autism can have problems with certain types of cognitive processing where they need help from a facilitator in understanding. To the lay person, this is puzzling and it seems illogical. Why for example, can a particular client do complex math but can't count change? Why is another autistic client's memory exceptional for facts and figures but he has trouble in some areas of reasoning?

When we see these incongruences in client functioning, particularly among those using AAC with facilitators - the casual observer might think the facilitator is filling in the gaps with their own answers. I do not see that in this case of Sue Rubin but it has happened with some facilitators. Again, good training is key, as is the use of the most appropriate and least restrictive use of AAC tools.

Parents will I hope, approach AAC with the same optimism but careful consumer awareness and education that is necessary when exploring any avenue of help for their child.

If you're not interested in using common sense, move on to one of the reviews giving a very positive review of this DVD. For the rest of us wanting to be realistic, read on. I too bought into FC for a number of years. But eventually, it becomes almost a cult, and the world is broken down into "believers" and "non-believers." If you question anything about FC, you become a non-believer and are no longer accepted in their world. You may think I'm just jaded. I've lived more autism than most. I worked in the field for 20 years and met 100's of individuals with autism. I also have a son with severe autism. I've seen some individuals who obviously can FC, but they can also print and write short sentences. It is physically impossible to write poetry, etc if you're not looking at the letters and at the same time have no reference point of relatively touching or locating the correct letters on a keyboard. This is what comes out: "ciicme ice caewossd cjare." I typed that using an FC-type method. It's garbly-gook, but a true FC believer would say that I typed something poetic that really means something like "click me in ice, caring would in a jar" and would have some deep autistic/poetic meaning. I don't have to pretend that my son has some deep poetic, Bob Dylan-like ability to write to find a purpose and love for him. Step back, live in the real world, and love and enjoy your friend/family member with autism for who they are, not who we would pretend for them to be.

I think the film is absolutely incredible, but I feel the need to first address the doubts shown by several of the other reviewers. I just came from a 3 day seminar, attended by 20 people, to learn about Facilitated Communication. 15 of the people were teachers/educators and 5 were parents of autistic kids(including me). I must admit that I was originally quite skeptical, but there is no doubt that Sue is actually doing the typing herself. Her aides (she has several and new ones keep hiring on as old ones leave to do something else) do not hold her hand when she types. They merely hold the keyboard so that it is as the proper height and angle for her. They are working on finding or making some kind of stand for her, so that she won't always have to have an aide. However, she tires easily and slumps further and further down into her chair as she types, and a human aide is able to accomodate this. Also, she seems to need to "ground" herself every so often by leaning her head against the aide.

I was not only an audience member, but got to actually sit with her while she worked with my friend's 2 young sons. She also interacted with my 8 year old son, who is fully verbal, but he took a instant dislike to her because she opened his bag that he had sitting on the desk. Thus, this was not a fruitful meeting for him. However, I do feel that I am able to say, without any doubt, that Sue is "for real."

Having said that, I found this seminar rather upsetting. I expected to find that my friend's 2 non-verbal boys would experience a sort of "rebirth" in being able to communicate. They were, in fact, thrilled, and were actually typing things like, "I can spell" and "I can spell too." I could see that the facilitator was not forcing their hands, because she just placed 2 fingers under the boys' wrists. Also, she asked one of the boys what his address was. He typed it himself! As I had registered the family for the seminar, I know that their address was not given to the seminar. (I don't even know their actual address, myself, and they are unlisted in the telephone directory.)

So why did I find this upsetting? Because, even though many of these people were able to communicate, they were still very autistic, with all the strange things that can go with that. One wouldn't type any answers that contained the letter "A." Another acted completely crazy (scary, actually)and mentally retarded, and he would only type about food. While they were certainly better off in being able to communicate, by no means were they "regular people just trapped in a dysfunctional body." Many of them still had very peculiar ways of looking at things, had serious behavior problems, were afraid of anything new, were uncooperative, and more. And the autistic adults had all sorts of emotional baggage from having spent many of their formative years in state hospitals for the insane.

Nevertheless, I think this documentary is brilliantly done, and is an extremely important source of information for parents who have no hope. That was the case of my friend with her 2 sons, ages 6 and 9. It was as if she and her husband thought there was very little brain function at all. They certainly loved their boys, but they expected less from them than you would of a cat (let alone a dog!) It was only after 2 years of hounding them to try something, anything (!), that I saw this film and made them watch it. Now they see that their boys are actually quite intelligent, and are thrilled to be able to communicate their needs. For that, they, and I, will be forever grateful to Sue Rubin. She is responsible for changing the lives of that entire family and, I'm sure, many others.

I am the mother of a child on the Autism spectrum. I also have a nephew who has Autism and a cousin with a child with Autism.

I thought this documentary was excellent. I'm surprised that there were other reviews of this film that were so negative.

Facilitated communication may be controversial, but I can't imagine how someone can watch Sue Rubin communicating and believe that it's being made up by her assistants. She is obviously communicating and responding to those asking her questions independently.

We have utilized another controversial treatment for our son. It has involved a complete change in his diet and vitamin supplements. This has allowed him to get so much better that he is considered to be off the Autism spectrum at this point. If it weren't for controversial treatments for this diorder then we may well not have made much progress in it's treatment in this past decade. With so little known about autism, I think it is dangerous to reject anything that so obviously works until we know more about the disorder of Autism, why it occurs and how to effectively treat it. My nephew and cousins son have not benifited from any of these alternative treatments and they continue to be well within the autism spectrum and possibly will have difficultly living independently in the future because of the little progress they have made with traditional treatments.

I found the film inspirational. To see that someone could blossom at 13 to the point of being able to communicate and be a functioning member of society is amazing. However, she is still Autistic and requires the assistance of others in order to maintain this success.

This view into the world of Autism is moving. I have witnessed as the mother and familily member of children with autism, that many people assume that our children are less than typically developing children. The comments others make, even in the presence of our children, are sad. However, Sue Rubin shows that people with autism can go to college, live on thier own, and lead a very ordinary life.

I saw family members and friends who were dedicated to encouraging Sue Rubin to be all she could be. And I saw a young woman who was succeding in that goal.

I think everyone should see this!

I'm absolutely appaulled by the negative reviews written about this documentary. My nephew has autism and shares some of the behaviors Sue Rubin and the other autistic people in the film exibit. It is clear to anyone that has first hand experience with people with autism that this documentary is authentic.

Additionally, my sister-in-law's mother assists a child with a communication device. Not only does this child use the device with my nephew's grandmother, but with all whom she communicates with. There are several examples of this seen in the film. A number of people hold up the device for Sue to communicate with, not just one caregiver with one point-of-view. Sue is clearly and thoughtfully spelling out her sentences... as is the child my nephew's grandmother works with.

The communication device is controversial because it has been abused in the past for personal gain by scholars and caregivers. Nonetheless, this should not take away from the tools value. In fact, the documentary isn't about the tool, but it's about the struggles and successes of an autistic person to communicate and attempt to live a full life. This is what should be learned and celebrated from the film.

Very little is known about Autism... but one thing is clear. Sue is making choices for herself. I don't believe that can be disputed, and does offer hope for all autistic people. This documentary is well worth seeing.

This story of autism, as told by one who lives with it, is enlightening and revealing, even for those of us who, professionally, "know" about autism. This is a must see video for parents and teachers of people whose life challenges include autism and other pervasive developmental disorders. Outstanding in every way!!!!

I'm late coming to this forum, but having owned the Autism is a World DVD since soon after it came out, and having loaned it to many (very impressed) people, I realized I need to purchase another. As a Speech/Language Pathologist with almost 18 years' experience with Autism and Facilitated Communication, I've had varying degrees of success with FC with dozens of people with Autism and have found Autism is a World to be a wonderful and exciting way to show many truths about autism.

Unfortunately, there are lots more "common sense" MISconceptions about autism out there than there are understandings of just how inconceivably complex and misleading this condition can be. How do I know that? Because I get my understanding (hopefully, constantly growing) of autism from people with autism. Now there's a novel idea! Seems simple enough, but I can assure you that you need to do more than read "scientific studies" to understand autism and FC.

Share this video with others, read some of the many wonderful books written by, or in collaboration with, people with autism. If possible, seek out individuals who use FC. Seeing may not be believing, but holding someone's hand or arm and feeling that person push YOUR hand toward the chosen letters (only after some coaching by a well-trained facilitator) is an amazing experience. FC isn't for everyone, but it opens the world to some.

This documentary has stuck with me since I first saw it several years ago. I share it with Speech therapists, teachers and parent who are involved in bettering the lives of people with autism. It is a reminder to us to never underestimate these folks, no matter how "severe" their autism may seem. Seeing is believing. VERY powerful!