New Avenue of Communication for People on the Spectrum

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A video documenting People on the Spectrum Gaining Communication through Innovative Technology in a joint effort with Hewlett Packard, Autism Speaks, and others in support of what is described as the "Hacking Autism" project, which effectively means using brain power and technology to find improved avenues of communication through technology for many people on the spectrum that did not previously have an avenue of communication.

These people on the spectrum, featured in the documentary were also provided an opportunity to share that message with the world, in their own voices with this exciting new technology for new avenues of communication.

Dr. David Travers delivers a passionate and steely focused narrative to describe this new communication technology in this documentary called "I want to Say".

Dr. Travers suggests that every person in this new communication program was able to make substantial progress in this new improved avenue for communication.

I could not get the video to link directly but it is linked below from the Official You Tube Blog where it was premiered for the public to view. I found it to be very inspiring because so many children and young adults were finding a voice through this new technology, and were also provided an opportunity to share that message with the world. .

http://youtube-global.blogspot.com/2013 ... ng_26.html

this is a new recycling of an old hoax.

No, it is a serious video, if you watch it. It is from the official You Tube Blog Page.

I've heard of some nonverbal persons typing on a laptop (less flickering light than a desktop).

And I also think American sign language has a lot of potential.

It is a keyboard which talks, which is fine. It is assistive communication, which gives the person one more positive avenue. It sounds like Stephen Hawking, or more precisely like the assistive communication which Stephen uses, and that also is okay. The device kind of saves up the words and then talks in a sentence.

At least for me LCD screens were worse than CRT's, but LED's are great. I'm not sure if it has something to do with the florescent back lighting or not. And it got worse as I got older.

I've watched the first 13 minutes out of 27 minutes.

What I don't like:

At the very beginning there is an adult touching a child's back and shoulder. It's like the adult is going through the motions of what a caring adult should do. The adult is playing to the camera. Whereas . . if the adult actually knew about sensory issues involved in being on the spectrum. I like touch, but I kind of like it to be predictable and the same touch each visit or each time. As a child, I did not like the adult to keep touching me.

Towards the beginning, there is a doctor saying "a child's life." And the obvious question, What about us adults on the spectrum?

There is a lot of the video with the parents talking about how difficult it is for them, which is understandable, which certainly is one important topic, but . . it tends to swamp everything else.

What I do like (kind of):

10:45 into the video, they briefly show Temple Grandin. Hooray, an adult on the spectrum! Yes, maybe the only adult a lot of people know on the spectrum is Temple. And I'm glad we have her, and I generally agree with her on a lot of specific issues. I do just wished they showed a wider variety of adults.

Good point. Some people confuse this with facilitated communication, which is controversial and not accepted among many professionals that work in the field of Augmentative and Alternate Communication

http://en.wikipedia.org/wiki/Augmentati ... on#History

Chalk one up for a variety of possibilities being open to people, and I think also for light-touching a variety of possibilities.

Just for clarification, if I am not mistaken, at the beginning of the documentary it is the mother of the young man that is touching his shoulder. If so, she likely understands his general comfort zone in how he accepts touch.

Part of the difficulties with including the voice of people on the spectrum in these type of documentaries, is the level of discomfort that may occur in the filming process. It is also worth recognizing, I think, that while many individuals on the spectrum have difficulty with people touching them there are others that are hypo-sensitive to their environment and crave sensory stimulation, including touch and hugs.

Part of differences in opinion in what is described as the Autism Community is that there is the natural tendency to view autism how one personally experiences it. It would almost be impossible for a hyper-sensitive person to the sensory environment to be able to understand what it is like to be hypo-sensitive and seeking the sensory stimulus unless they have been in both places of human experience, which is also common among some people on the spectrum.

I recognized that the young man was nervous at the beginning of the video, and that what I identified as his mother from viewing the rest of the video, was attempting to comfort him, which initially jolted him a little bit I think because of his overall level of discomfort in being in front of a camera crew. Of course, only he could fully relay his own experience in how he felt at that moment, because observed behavioral reactions at times don't come close to what one might perceive of another person's internal experience.

This is part of the problem with the current observed "behavioral model" used to diagnose ASD, which is becoming entirely a behavioral one with the DSM5 criteria, even in what is described as behaviors associated with sensory issues, instead of the internal experience associated with those behaviors, that do not always match, particularly if there is no way to effectively communicate that internal experience that could be an issue either associated with something like difficulties with basic communication or more complex communication issues like Alexithymia in those that communicate in otherwise observed "advanced" ways.

And also, I think it is worth noting that while older adults were not included, except for Temple Grandhin, that some of these children were not young children, and the one young lady was specifically identified in college and can be recognized as an adult I think, even though she looked young. It can be difficult to assess age in the older teenage to adult years unless age is identified by some specific identifier, like going to college. I if I remember correctly, that is identified past the 13 minute mark in the video. They presented a longitudinal view of this young women's life from videos in childhood.

One comment I found a little disconcerting was the mother that commented the caregiver described her son as "sweet for an autistic kid", however that may be a relative comment specific to that caregiver's experience, not necessarily a generalized statement to the rest of the spectrum per what she may recognize and identify more specifically as Asperger's syndrome, high functioning autism, or others that may communicate more affection through verbal and non-verbal communication.

It was inspirational seeing the people on the spectrum "light up" in excitement, in the documentary, over this relatively new avenue of communication, but I also found the passion in Dr. Traver's com-passion (not pity) for people on the spectrum, inspirational as well.

My daughter goes to a school for autistic kids. Although she is verbal, many of the children there are not. In the past couple years these children have acquired ipads with apps that are text-to-speech for some, pictorial replacements for the old PECS board for others. I don't know who paid for the ipads or whether they are school property or belong to the kids, but they seem to be very effective. Whener I go to the school I see the kids carrying them around wherever they go and using them for communication and also for academic work. At last year's graduation ceremony one kid used his to give a speech.

Tablet computers are very effective for this purpose, probably more effective than anything else out there. They are so light and portable. They are also more versatile than any other device. They can do text-to-speech. And they can also do pictorial communication like PECS but with the ability to easily swap in new icons and the ability to adjust the size of the icons to match motor ability. The flexibility is unlike anything previously used.

I bought an ipad too. My daughter doesn't need it for communication but there are lots of other great apps a kid can use. When I got it up and running I went to show her how to use it but she already knew. I asked her how she knew and she said one of the other kids at school showed her how to use his. This is revolutionary stuff.

Wow. That is not good. Not only are sensory issues big issues in terms of a person's life, but there are various methods, "tricks," and workarounds that can significantly help sensory issues. And it's a significant missed opportunity not to be open to look for these methods.

Maybe this is based on the mistaken idea that the only important things are those which can be easily measured, whereas in fact sometimes the important things can only be estimated.

Yes, revolutionary stuff indeed. And good for your daughter!

Not sure if you have heard about it, but Sue Swedo the Chair of the DSM5 working group committee, recently released information from the APA website that all RRBI's can be met by client history alone, in future diagnoses under the DSM5 criteria for ASD. The three mandatory criterion elements for social communication will be required observed at the time of diagnosis, with at least a history of symptoms present from early childhood along with the current observed impairments, in an attempt it seems to confirm neurodevelopmental causation of the observed behavioral impairments in social communication required for diagnosis.

Here is a link to her statement here:

http://www.psychiatry.org/practice/dsm/ ... m-disorder

And I want counselors, teachers, and other professionals to understand that stimming is 'normal' (if I may use a loaded word!) and is functional. At times, it helps me to maintain concentration. At other times, it gives me a much needed fun little break, and then I can continue again with productive activities.

It is also far from a trait specific to the spectrum, as many people use "stimming" as an adaptive method to either better focus or at times relieve the anxiety that may be caused from difficulties in focusing, or anxiety in general. Stimming can also be used as a type of acupuncture to stimulate endorphins when the goal is to limit the potential greater discomfort of physical, sensory, or emotional pain. Interestingly, it is also commonly observed in the non-human animal kingdom, likely as a result of most if not all of the adaptive benefits to one's experience in one's environment.

In general, in the larger world, stimming is often referred to as nervous habits, which is a good general descriptive observation as stimming, in general, is likely most often used as a repetitive behavioral physical action to alter synaptic activity in the brain. But, of course without that type of detailed description provided of the underlying neuro-cognitive process, which in even greater detail would likely describe the resulting alteration in neuro-chemicals/hormones including serotonin, dopamine, endorphins, oxytocin and adrenaline associated hormones that impact synaptic activity in the neuro-cognitive process.

For me an addiction to vigorous exercise was my method of stimming from age 12 until now. Before it was very unusual behavioral activities. For a period of time I was not able to exercise, the stimming that resulted was unexpected as I had come to rely on exercise to all alter all of the neurochemicals/hormones listed in the last paragraph, as a method of adaptation to my environment.

Stimming is also likely, at least in part, the result of human animals evolved to move almost constantly, adapting to a new cultural requirement or conscious desire of inactivity, to pursue more sedentary required or desired activities.

One, also I think, could make a good neuro-chemical/hormonal point that some of that required and/or desired sedentary activity including watching TV, Internet usage, and Gaming activities are also stimming activity because those sedentary activities also alter the neuro-chemicals/hormones in many of the same ways that flesh and blood human interaction and human movement does.

So, in general, stimming can be observed as novel, complex adaptations to a much different social-cultural environment than what human beings are evolved for over hundreds of thousands of years. There is no normal in nature only adaptation to what is. The flux from the perceived human abstract construct of norm, is actually a "norm of nature" for adaptation and survival. When one takes away the mandatory uncomfortable requirement to adapt for any animal the result is often not a positive one, in the long run.