Dr. Sanja Gupta
Chief Medical Correspondent
CNN
Dear Dr. Gupta
Your interview and comments about an autistic person who is obviously very intelligent and able to communicate at a high level with the use of technology are helpful to assisting public understanding of autistic persons with characteristics similar to that individual. It is also helpful that you have directed people's attention to finding others who might be in a similar situation.
I hope too that you will bring your cameras to the truly low functioning end of the autism spectrum of disorders. There are many truly low functioning autistic persons who do not have a basic grasp of language at the outset. For many technological communication tools, voice synthesis technology, will not offer help. These truly low functioning persons do not necessarily make for a feel good news story on CNN. These souls will not respond to your invitations and you will not be able to engage in "lively email banter" with them. Take your cameras to some of the institutions which provide adult residential care for some of these persons much less fortunate than the person you interviewed. After your visits they too might have "opened your eyes about the world of autism", a big part of that world that is not regularly featured in Hollywood movies and CNN features.
Respectfully,
Harold Doherty
Fredericton NB Canada
I would submit that Amanda would have been one of those low functioning autistics you would like interviewed, had the merging of technology, awareness and funding had not worked in her favor. I agree that there are many many autistic individuals functioning below Amanda's level, but I think CNN made a big step in showing that even someone who appears to be unable to communicate CAN communicate given the right tools and circumstance.
ReplyDeleteBill
Bill
ReplyDeleteI agree that CNN's effort was helpful for the reason you state. Hopefully, but I am not holding my breath, they will also visit some truly low functioning autistic persons who can not communicate as does Ms. Baggs.
The reality is that such technologies do not assist everyone. Ms. Baggs CAN communicate very well and demonstrates high intelligence. Not ALL autistic persons are that fortunate. I have not seen Hollywood OR CNN go into mental hospitals or care facilities to film severely autistic persons who can not communicate with or without technological assistance. I am sure there will be more stories of individual autistic accomplishments. The feel good stories will get reported and movies will be made. The less fortunate will receive no coverage and no high profile visitors.
Mental hospitals and care facilities generally do not give the kind of training or assistance that will allow people who use such technology to benefit from it. You cannot tell from going into those places, who will and who will not be able to benefit from such technology. You cannot tell from the level of assistance someone needs, either.
ReplyDeleteI know (online and offline) many people who spent years or decades of their lives in such facilities, regarded as non-verbal and/or low-functioning, and now type and/or speak to communicate. If you go into a facility with cameras, with enough autistic people, you will likely meet someone who can do that. You will be unable to tell them from anyone else autistic in the facility, however.
I think that showing the lives of people who live in such facilities is important, but not in the context of defining them as a different sort of people than people who live outside the facilities. The environmental deprivation that exists inside such facilities makes people more severely disabled than they would otherwise be in the first place (this is true of people with Down's syndrome, for instance, as well as non-disabled people who get put there by mistake). It's important to show that any sort of person could live outside of them with the right assistance.
They did actually show my self-injury on CNN. I used to do that all day long, until I either passed out or lost the cognitive or motor skills to continue. With a good deal of work, I only do that rarely. It sounds like I would have fit your purposes better a few years ago.
I do think a wide variety of autistic people should be shown, but I don't think that it's realistic to expect the entire autistic spectrum to be shown in a description of one person, nor to complain that a particular person does not represent all autistic people. I have gotten complaints from the opposite end as well, that my appearance contributes to the stereotype that all autistic people look like me. So I have heard that I am too low-functioning to be shown, and also too high-functioning to be shown, when it seems more like people are starting with an unrealistic expectation that a single person (whoever that person is) should constitute and represent all autistic people, and that something is wrong when they do not represent a particular kind of autistic person.
However, having lived in and out of institutions myself, and knowing who lives there and who doesn't, I can say with a good degree of accuracy the same thing that a woman in California said at the Community Imperative conference several years ago -- the population of disabled people inside and outside the institutions are identical. The difference is where they allowed to receive assistance and what kind of assistance they are allowed to receive.
I even used to know a man who was thrown out of a state institution into a community program because he was so destructive to the institution's property that they were sick of having to replace it. He had no communication system beyond a couple of signs (and if he learned another sign, he forgot one of the old ones), but he got a much better life in his own house with a roommate. He self-injured (in fact had blinded himself at some point), fought staff, destroyed property, etc, but was fully able to live in his own place with supports.
I think it's important to push for those opportunities for everyone, rather than pushing for everyone to meet a certain level of functioning in a certain area before they can get out. If that were true, I'd have never gotten out. (Especially since I was more capable of some things when I was institutionalized than I am now. If I were in an institution right now, with my particular set of skills, they would not let me "into the community", they would say I was not ready.)