Thursday, February 22, 2007
A note on autism
Some of the responses to Dr. Sanjay Gupta's blog about Amanda Baggs raise questions about her diagnosis and whether she is indeed a low functioning autistic. We spoke with her health care providers and reported what they told us. Also, Amanda shared her medical records with us from various providers diagnosing her as autistic. We are not in the business of diagnosing people's medical conditions. But, as in all of our stories, we conducted our own independent investigation, spoke with expert sources and reached informed conclusions.
I idea so many people question Amanda�s diagnosis shows something I have known for a long time. The vast majority of the people know nothing about a large segment of the population. My 15 yr old son was diagnosed 12 yrs ago. For the past 12 yrs, non-medical people have questioned his diagnosis.
I am glad to see you do a story on Amanda. It is important for people to get to know their neighbors. However, I think the fact so many people have questioned her diagnosis is an indication that you should do a special on autism. It is amazing how little non-autistic people know about autism. Heck, there are times I have to explain autism to my son�s teachers!!!!
A new study shows autism is much much more prevalent than ever previously believed. This country needs to know about its own citizens!
When an autistic talks about their views on treatment, cures or simply their life with autism, it has become common to doubt their diagnosis. It seems that the major reason behind this doubting attitude is to preserve the attitude that autism is bad and needs to be cured. Anyone who can speak about it can't be autistic, because autistics don't speak. At least, that is the common perception and one that is bandied around as being most prevalent. The most visible example of this behavior towards autistics speaking out, is Michelle Dawson, a Canadian autistic fighting for the rights of autistics in that country.
The diagnostic label aside, Ms.Baggs is obviously very intelligent and, with technology, can communicate at a very high level.

Does CNN intend to do a story on the many low functioning autistic persons who do not share those characteristics? Will Dr. Gupta take his cameras into the hospitals and residences where truly low functioning persons reside, cared for by others, some with little or no communication skills? Some of these people engage in self injurious behavior, some are on medication which renders them much more placid.

Hollywood loves stories about autistic persons with great skills, or in Ms. Baggs case, obvious intelligence. CNN, as a news organization, would be doing everyone a service if they portrayed the full range of realities on the autism spectrum of disorders - including those that are not cheery and heartwarming.
As a mother of a 16yr old with Autism, who is considered "high functioning" I had too wonder about Amanda it puzzled me, if she is considered low functioning, How can she communicate so well, through the computer? How did she get taught these skills? I�m not doubting her diagnoses by any means just leaves me with allot of questions about my daughter is very verbal, yet she can not read nor write, I am just thinking it would be amazing if she was able too learn the skills of communicating through the computer the way Amanda does, maybe even a little frightening, in that it might actually, be a in sight as too what she is actually thinking and feeling, a way of expressing herself. I was very happy too see this story on an adult with autism. More often then not when I see stories on autism the focus is on children.

Fascinating story!
If people question Amanda's diagnosis they would really question mine. I am a married mother with 3 children, a B.A. degree and have a mild form of autism called aspergers. People need to understand autism comes in many forms and every autistic person is different. Some can't speak and some are verbose. Some are shy and others don't know the meaning of the word shy. Some have mental retardation and others may be geniuses. Yet all still on the autistic spectrum.
It is apparent from watching the facinating story of Amanda Baggs that she told us her Diagnosis herself. She has one of the autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.

There is one more relatively rare ASD that is X-linked thus it affects almost exclusively females. It is called RETT's syndrome. This is what I believe Amanda told us she has. After a period of normal development, autism-like symptoms begin to appear. Just like Amanda was in a normal classroom and did fine and spoke normally so she has a really good syntax and sentence structure base that she learned in school.

Then the childs mental and social development seems to stop and not progress anymore ie: she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops. Just like Amanda Baggs.

Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.

There is promising news to report though. The NICHD found a gene causing RETT's syndrome and in further studies in mice it has been found to be reversible. It will be a while before that will be clinically useful, but any woman with a history of ASD should have screening and counseling as RETT is an X linked trait.

On a personal note, I am a 41 yo female with an amputated leg, but I am super intelligent, MENSA member, have my MD degree - yes a physician Dr. Gupta like you, and also have OCD and high functioning Aspergers. I did love to be rocked by parents though until I was 10 yo but I would not let anyone else touch me except my family. As an adult I have no friends really except my family except my cat who owns me.
Being a mother of an 8yr old autistic son I am standing and applauding you Dr. Gupta for this article about Amanda! My sons diagnosis at 3 was severe and i was told to put him into a group home and forget him. Sorry but my child is not disposable. I have poured my entire essence into him, got early intervention thru the public school district and i cannot stress the importance that any parent facing the diagnosis of their autistic child to seek EARLY INTERVENTION. My biggest battle has been the legal side to this horrific disease. The judge who is now retired ordered a guardian ad lidem, I have gone broke hiring lawyer after lawyer dealing with the court system here and the DISCRIMINATION they show towards disabled children and in my case I am also disabled. I sure hope CNN does a story and SOON about the legal system and the rights we DONT HAVE as AMERICANS with this alleged ADA Act. I want to close by adding that my sons internet time has been a real PLUS. I agree with Amanda in the part where she stated the internet is not distracting, overstimulating and i monitor my childs time online. Today he reads, writes, speaks, good eye contact and is now being diagnosed as "aspergers". Its time someone does a story to help us parents with autistic children on the legal issues. That is just wrong.
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