Monday, November 19, 2007
Autism: Finding Amanda
Do you know an autistic adult?

Since first meeting 27-year-old Amanda Baggs at her home in Vermont, I've asked just about everyone I know this very question. Surprisingly few people have met adults with autism, but an overwhelming majority knows a child living with the disorder.

That's no surprise, given that the latest CDC statistics say 1 in 150 children has autism. Boys alone have a 1 out of 94 chance of developing it. The rise may be due, at least in part, to a broader awareness and diagnostic criteria under autism spectrum disorder. But without a doubt, the numbers mean a whole new generation of children will be growing up with autism.

CNN Chief Medical Correspondent Dr. Sanjay Gupta and our team have done many stories on autism over the years. Much of our reporting focuses on one approach - detect and treat as early as possible. Everything from behavioral therapy to autism's possible relation to vaccines to alternative therapies including surfing, auditory processing or even swimming with dolphins. That's because much of the research on autism is focused solely on identifying it and intervening while a child is still young. For most parents and doctors, helping an autistic child is about reducing their autistic symptoms and behaving more like a typical, non-autistic child.

But we wanted to find out what happens to those people who don't change, those who go on to live with their autism with all of its challenges and all of its joys. That's when we met Amanda Baggs. She's a young woman living without a guardian. She may not be able to speak or form words in the traditional sense, but she has a loud message for the world when it comes to autism and disabled people. From her small town in Vermont, she has made a name for herself on the Internet. We first profiled her in February. For hundreds of thousands of viewers, she redefined what it means to be autistic. Click here to watch Amanda Baggs, "In My Language" and here to read her responses to viewers.

Amanda Baggs has a strong message for parents of autistic children. She types as a computer voice reads her words: "Listen to other autistic people. In fact, expose autistic children to a wide variety of autistic adults. It may be the autistic adults who do have either typing or speech who are far more equipped to be able to communicate with other autistic people."

It's such a basic concept - introducing young autistic boys and girls to autistic men and women. But finding older autistic individuals is often the last thing on parents' minds when their son or daughter's autism is diagnosed. Jenny McCarthy, actress and bestselling author of "Louder than Words: A Mother's Journey in Healing Autism," was one of them. She recently appeared on CNN's Larry King Live.

Jenny McCarthy and Larry King aren't the only ones who are trying to learn more about the process of raising a child with autism. As I reported from the "Autism National Committee" annual meeting last month, parents told me that there is an acceptance process with autism. Louisa Smith, mother of a 5-year-old, told me that she was still in the sad phase of her son's diagnosis. "I just want him to live a happy life. There are actually happy adults here living with autism. I didn't think that was possible when they first told me he was autistic."

Scientifically, so little is known about autism. We don't know the precise cause. There is no cure or proven prevention. On a human level, there is so much knowledge to be learned. Tonight, you'll meet Amanda Baggs and people like her in Dr. Sanjay Gupta's special report "Finding Amanda." She will be your guide into the world of living an autistic life to the fullest.
My child was normal at birth and met all milestones. At the age of two she stopped talking and playing. All of her tests and labwork are normal with the exception of heavy metals: She is highly mercury toxic from the more than 200 mcg of ethyl mercury she received in her vaccines in the 90's. Children today do not receive that much in their vaccines but, with the rates of autism still as high as they are, that would tell me that it only takes a little to cause autism and other problems. Why would anyone think it's OK to inject the second most toxic substance known to man into human beings?
I will never "accept" that my child was made autistic from mercury in vaccines, given the fact that the pharmaceutical industry knew that mercury in Calumel killed people in the 40's and 50's - given the fact that it is widely known that mercury is the second most toxic substance known to man. She was a perfectly normal, happy, bubbly little girl until she was 2. No parent, family member, or friend should have to "accept" such a thing. Shame on anyone who tells people who have people with autism in their lives that there is an "acceptance process" that they must go through.
For evidence of the mercury-autism connection Google MSDS Thimerosal (thimerosal is 50% ethyl mercury) and Rolling Stone's Robert F. Kennedy Deadly Immunity article. The pharmaceutical industry knew that mercury in Calumel tooth powder damaged and killed people so why did they put it into vaccines that would be injected into people? No one affected by autism should have to go through an "acceptance process" when it is due to mercury poisoning via vaccines given by people who knew of the associated risks - people who were supposed to be protecting us and our children. My child was normal until 2 weeks after her third hepatitis vaccine at 11 months and was diagnosed autistic at the age of 2. She was normal, happy and bubbly and had met all of her milestones previously and then one morning she was just gone. Given the fact that levels of Thimerosal have been greatly reduced in vaccines (though not entirely eradicated) while the rates of autism continue to be at ridiculously high levels (1 in 150 children and 1 in 94 boys), one can logically conclude that only a small amount of the second most toxic substance known to man injected into humans causes serious damage. It is unacceptable and shameful that this has continued in spite of the long history of the evidence of harm that preceeded it.
Even if mercury causes autism, it's still important to accept it. Mercury poisoning causes brain damage. If your child is conclusively found to have mercury poisoning that has affected their brain, removing the mercury will help them, but they will still have brain damage. And just like brain damage from any other cause or a genetic disorder, you'll have to accept what cannot be changed.
Doesn't the fact that there are few autistic adults and an exploding number of autistic kids indicate something of more importance to Dr. Gupta than talking with Amanda Baggs. The real point is that kids are being made autistic by the environment and not by genetics. If so, then who really cares what Amanda's opinion is on what parents should do. Parents need to try and help their kids get better from a PHYSICAL illness, not accept the illness and the subsequent mental problems than come with it.
Yes, it's a grieving process. These parents are grieving the death of the perfect child, and the anger and denial they feel is natural. But there is no legitimate link between vaccines and autism, just conspiracy theories and junk science. We need to move beyond the myth, and beyond the denial and magical thinking that goes with it, and stop demonizing these kids. Autistics need acceptance and accommodation, not quack remedies. Media darlings like Jenny McCarthy care nothing for the science, but they know what sells, and they are very good at telling parents what they want to hear. Thank you Dr. Gupta for having the character to tell parents what they need to hear.
Amanda is fascinating to see and I appreciate your reporting on adults with autism.

Currently the focus for my 4 year-old son is enabling him to communicate with us. The fact that she seems to communicate so well gives me hope. As we continue to work for effective treatments for kids on the spectrum, I can only imagine what life will be like when my son comes of age. The future is looking brighter and brighter.
I am watching the beginning of the fascinating report on Amanda and Autism...speaking of not being accepted, the lst ad following the introduction is for e-harmony.com...my son has a mild learning disability and was rejected in seconds by e.harmony. Perhaps you should investigate your sponsors in regards to the content of your show! At least Dr. Gupta sees the positive and potential in others.
Every parent -- and, more to the point, every person in the autistic spectrum -- will find their own way to cope. But references to mercury as the cause are just misplaced. Science (by which I mean well done, actual science, rather than articles in Rolling Stone) shows zero link between any vaccination and autism.

Indeed, the cutting edge science today points to genetics, rather than any environmental cause. That a child makes it to 2 without visble signs is not evidence against genetics. Remember, many genetic processes don't express until after birth (e.g. brain development, puberty).

But whatever the cause, the article focuses where it should until and unless science finds a means of prevention: on connecting with and helping people in the spectrum so that they can grow, live, and love.
After working with children and adolescents with autism (and their families) for the past 6 years, I've come to learn the importance of using people first language. Just tonight, during one of my Master's level classess at UT Austin, we had a high school boy presented his life with autism to us. He reiterated the point that he is a person first and has autism; he is not an autistic person. I appreciate the perspectives given within the popular media, however, when reporting on this population, it would be beneficial to perpetuate people first language. Amanda is a person with autism. The conference that she attended is designed for people with autism. I work with children with autism, not autistic children.
I'm a proud mother of a 31 year old autistic man, who is so creative that we "normal" people have difficulty keeping up with him.

Devon is a very talented artist who is verbal when he feels comfortable enough to speak otherwise he uses an assisted communication device without voice to express his thoughts and to explain his autistic world to us.

He is very adapt at the computer and has created his own style of artwork with MS Paint. He spends hours online copying photos of people on Youtube and blogtv. and then turning them into remarkable portraits with humour of these people. His web site featuring his artwork is:

http://www.devonwaltonworld.com

He has just begun to sell his artwork as note cards, and now knows how valuable he is as well as his work.

I appreciate you showing, "Finding
Amanda", because Devon and I have watched her video and he's told me that he feels the same way she does. He needs to be prepared for events and can become overwhelmed and will react like Amanda and DJ. Devon also has his own language and similar behaviorisms. He has always used art to express himself from a very early age.

Thank you Dr. Gupta, your special allowed autistic adults to speak to us. Devon has taught those who work with him and myself so much about autism. He is truly a gift.

Jill Walton
It is encouraging to see an adult with Autism with excellent assistive technology that allows her to communicate. I hope that Amanda's skills and abilities have provided opportunities for her to be gainfully employed or even self-employed.
I am a military spouse. I have a 16 year old son that has Autism and borderline MR. As a military family we relocate approximately every 3 years. This means that our child is re-evaluated for eligibilty and his IEP is revised with each move as well as annually.
Other challenges we have encounter include never qualifying for SSI and Medicaid because of our income and complexities of military pay. The Medicaid waiver waiting lists in the states we move to are so long that we never qualify for the medicaid waiver for our son either. I have not had respite care since my son aged-out of early intervention services.
I would like the Governors in each state to go to Congress and ask for federal support to provide Medicaid waiver funding specifically for the military community so that if a family qualifies in one state they will not have to get in line for the waiver again in the new state. Each child and adult deserves to benefit from opportunities that will improve their qualify of life. I worry about our son and the types of support he will need as an adult.
I am not sure what I will do when my son turns 21 if we cannot rely on the government for support from Medicaid. From the video, it looks like Amanda is fortunate to live in an assisted living facility or disabled adult community of some kind. Most likely, SSI and Medicaid is providing the financial and medical support that Amanda needs but I am curious to know what will happen to the 1:150 children as they grow older and need similiar support? Will the state and federal government continue to be able to support adults like Amanda as they leave high school and the protections of the IDEA? I am very concerned that we as a nation are not looking closer at the long-term impact of the Autism pandemic. It would be wonderful if this aspect of your series on Amanda and other adults that have Autism could be covered. Thank you for raising awareness about Autism.
"Do you know an autistic adult?" - I am 50, college educated, and have Asperger's Syndrome, as do my two teenage sons. I was never diagnosed as a child despite having been examined by multiple child psychologists, although my sons were.
First I would like to thank CNN for sharing Finding Amanda with us all. She is definitely a gem worth finding. I would also like to thank you for listening to Amanada when she insisted that you increase your exposure to include other adults on the autism spectrum instead of focusing on only one person. There are so many out there who are willing to share their wisdom with us all if we are willing to listen. Thank you for opening the door.

A note to the people who have already written into this blog. My heart goes out to each of you. We do not know the cause of autism at this point and yes, putting mercury into the human body in any way appears to be a rather stupid decision. I am behind you on that.

But in the midst of it all, you have a small child who needs you desperately to understand, to accept them as they are, not as you wish they were and to love them unconditionally, in same way that every child on earth needs. If you choose to listen to the adults on the spectrum you will come to this understanding easier and faster than any other way. Your child needs you to do it. Don't throw away this gift in the midst of your pain.
I found your report rather interesting & can't wait to see more about my "world" & the people who "inhabit" it. Since I began to communicate via FC at age 13 & advanced to independent typing at age 16, I have broken through & destroyed many walls & barriers. As a consultant to several autism organizations, a speaker and presenter at various conferences, a genius formerly known as retarded, an honors and award-winning college graduate, a so-called role model and newly elected president of Autcom - at the conference you showed on tonight's program, I have overcome labels, stereotypes, prejudices, discrimination and maltreatment for myself and others with disabilities in MANY walks of life. My journey has been long and strenuous, but I am not now nor have I ever been a quitter. I passed double-blind tests years ago for the right to be heard in court and for a full education... and I bristle at anyone still having the incredibly narrow-minded temerity to call FC a hoax, a fad, or even controversial - the controversy is a product of unwillingness to assume competence rather than incompetence and an equally paralyzing unwillingness for some folks to unlearn what they think they know and open their minds to change. I am here to make people think, and I refuse to stop doing so - challenge FC if you wish - even though much of that challenge is foolish at best - but do NOT challenge me, my reality, my accomplishments or those of countless others whose "Prisons of Silence" were flung open by typing to communicate what we need to communicate, even though it may upset others and rock your worlds! - Proudly Free, Sharisa Joy Kochmeister - contact me if you wish at sharisajoyshares@comcast.net
Sanjay! Thank you, thank you, for turning the focus on adults! My 23-year-old son is one of these brilliant, wonderful people who types. He's getting ready to speak at his first conference next summer, a gathering of nurses who want to learn how to help patients with communication challenges. He's excited to make the trip to Foxwoods, but nervous, wondering if he'll be able to hang on through the conference. He's quite a fella. He lives with 6 other guys, and together they build birdhouses from re-claimed lumber. Their website is http://www.recycledbirdhouses.com
THANK YOU for airing this program!!!! It is about time that someone recognized that autism is something to celebrate and accommodate for and not something to fear and/or mourn. Like Amanda, I am PROUD to be autistic and hope my children will be as well. Please keep airing shows like this to educate people on the TRUTH about autism.
My 11 1/2 year old son is profoundly autistic and has been diagnosed as such since the age of two by 2 different pediatricians and a clinical psychologist. He is truly low functioning and lacks the ability to communicate with autistic adults. Does Ms Baggs, who communicates at such an advanced level, have any other helpful advice for my son?
It's pretty sad that there has to be this hijacking of an interesting subject to parents of autistic kids by people who want to advance this unsubstantiated anti-vaccine hypothesis.

I would really like to see the discussion on this blog return to the subjects posed and I would also like to urge any parents who think that the vaccine hypotheses of autism have any merit to investigate via peer reviewed, journal published science and not by searching Google.

Science on the subject can be found by searching http://www.ncbi.nlm.nih.gov/sites/entrez
Dear A. Chris Gajilan

I saw this Amanda's story when it was "AC360 special report." So glad to see again.
Thank you very much for bringing the light on her story.
I learned a lot about autism from it. Her story is absolutely amazing and very impressive. This story makes me gloomy but I think it will remain in my mind vividly than any other famous movie stars.
Also her language deeply impressed
us, she has a sort of naivety and
openness of demeanor. Amanda is precious woman!!

Amanda!! please discard your fear and then come on the outside world with the courage so that many people who have autism can have hopes.
There is still thimerosal (mercury)in flu shots.

I am keeping a blog of my experiences in trying to get information about area flu shot clinics where I live. It is truly frightening the amount of obfuscation, misleading and even false information that one encounters.

http://www.wideopenwest.com/~r_nemeth/clinic_timeline.htm

Robin Nemeth
North Royalton, Ohio
Can you please stay on topic?

By the way, instead of those dubious mail-order tests for mercury you could do it way cheaper at a local hospital. Not that Denmark, a country that for many years have had thimerosal-free vaccines, don't have autism.

Amanda Baggs rule! If you look at how she writes at her blog you'll see that she's very objective. Autism Hub which her blog is part does also have many awesome bloggers.
I live in the UK and did not see
the program. However I having been
typing to communicate for the last
15 years. I have a diagnosis of
autism and cerebral palsy. I was
written off as a child at the age
of 2/3 as retarded, with severe learningdisabilities. I began to type at the age of 15. I was able to speak words and the odd sentences but I was unable to engage in conversation and at the
age of 15 decided enough was enough. I have proved the experts wrong. I joined mainstream
college and studied at a pre-university level (after being
in segregated school for approx. eight years)and was said to
the brightest student the lecturer
had taught (with one other student
at that level). How ironic is that. The key to the door is communication and it is
not important whether it is
supported typing (facilitated
communication) or independent typing. I have done a mixture of
both over the years. I am always
going to have difficulties with
movement, fatigue, co-ordination,
muscle tone, fine motor control,
gross motor control. My movement
has however been said to be high
functioning - I am nothing short
of a miracle. My movement is
clumsy - but I can walk. My speech
is not good - but as you can see
I can communicate. I am where I
am today because I would not give
up. I have communicated and communicated
and communicated (via typing)and
no one can take that experience
away from me. It is part of who I
am. And I have loved every minute
of it. Retardation, autism, learning disabled, are 'disability labels'-not the person. I do not view myself as a label only a person.
To reiterate. If it is so hard to find autistic adults it must tell you something when there is a huge growth of autistic kids.

And to the person saying the "cutting edge" science points to genetics. At least read the journal articles. The genetics give a predisposition to autism, triggered by something in the environment, just like cancer, just like many diseases. In the case of the real cutting-edge research at Harvard, the genes are related to glutatione regulation, something that potentially points to effects of mercury based on theory from a few years back. There are no "Autism Genes", just genes that make one succeptible.

Sure you can be born autistic is you are exposed to mercury, peticides, and other chemicals in the womb. Just as one can become autistic after exposure at a young age.

I can't belive that there are people thinking autism is a good thing. This is not Down's syndrome, where there is actually an extra chromosome and there is nothing to be done to change the genetic code. There is it reasonable to grieve and come to acceptance. Autism is treatable, therefore there can be no acceptance of the disorder, only treatment and improvement, just like cancer. In fact, my daughter has Down's and developed autism later, although it was harder to tell than with other kids. She was speaking her alphabet and numbers to 20 at 3 years, was getting strong and healthy, then dropped off the map like many kids with autism - little speaking, constant ear infections, no socialization, repeditive behaviors, horrible digestion. Only when we separated these things in our minds from her Down's at 7 years did we start being able to help her. She is now talking again, has grown a bunch, and is much healthier with autism biomedical intervention. We and all of her doctors had assumed that the Down's syndrome was causing the issues and resigned her to suffer. Now they are shocked by her improvements. Her Down's syndrome was not the issue - it never was.

I implore parents here, do not fall into the trap of resigning your kids to autism. Plenty of people will tell you to do it, a bunch of them on this blog, but do not give up trying to help your own flesh and blood. Amanda Baggs can do whatever she wants, but she does not speak for anybody's kids.
I have been diagnosed with aspergers as an adult. I am one of the really high functioning ones that gets married, goes to college, has children etc etc. Here is my issue - What is being done about the lack of information and understanding Drs have about aspergers in adults? Some people think as long as you appear to function ok that it is not an issue. Yet adults with autism are very likely to be misdiagnosed and given medication that is not right for them because Drs don't understand aspergers in adults well. Adults with high functioning autism that do get married have a VERY high divorce rate, they have high levels of depression and anxiety and struggle with getting a job. Most people with high functioning autism KNOW they are different and need help understanding. Yet Drs understand even less. I really hope that Drs are learning more and more about it because at this point so many don't understand the issues with being an adult with aspergers and they don't know how to help either.
Actually, if you read the properly peer-reviewed journal articles, you will see that mercury and environmental factors don't have a whole lot to do with autism.

Amanda and the MANY autistic people I know prefer to be called "autistic", not "people with autism". People-first language is insulting to many of those being labeled with it. I am not a "person with ADHD", I am an ADHDer (and if it were grammatically correct to say "I am ADHD", I would - but since the whole diagnostic label is incorrect... I'll shut up now, this isn't the place).

Regardless of cause, it is VITAL that people be encouraged to accept their children for WHO THEY ARE. Even if you believe that autism is a separate entity from the person, you MUST recognize the impact it has on their identity. Regardless of whether or not ADHD was a part of me from birth or developed later on, IT IMPACTED MY DEVELOPMENT, and I would not be the person I am now without it.
This message is for "Autismville". You ask what is the way to bring your child along. Just keep an open mind. Trust your gut. Offer all the opportunities you can. When I saw a segment about typing on 20/20 with Diane Sawyer, I wanted to offer it to my 6-year-old but was told it wasn't going to happen because he had never been taught to read. Two years later he got fed up and did it himself. Later we made a hard decision, which was to choose a school for seven years where they don't believe in typing, because he wanted to try to learn to talk. It was a mistake, but we have moved forward. He still types with facilitation, so he's limited as to when he's able to talk. But he did achieve his goal of meaningful work and, for the most part, being understood. This is a process, and some of the steps are ugly. But my son is not defined by his "story". There's no "Meet John, he has autism", it's "Meet John, he's an excellent woodworker." New friends are not subjected to a litany of the early failures. No explanations, either. That's a victim mentality and we just don't live there.
Oh, no, I can't believe I messed up that link! It's http://www.recycledbirdhouse.com Anyway, after he had been there for 4 years, I was invited to come and volunteer on Fridays. I help set up work stations so the guys can jump in and build, or I lend a hand with baking so one or two guys can make a yummy snack for coffee break, or I help my son join in when it's time to do aerobics. If you have an opportunity to help out with anybody's work situation, DO IT!!
I am the elder sister of a 52 year old
autistic woman with intellectual impairment as well and who requires 24/7 supervisory care. Her condition is not something that anyone should want in his or her family, or for themselves. As to what causes autism, the jury is still out, and there are very probably multiple triggers as with cancer, There was no autism in my family, but my sister was born with the condition. There is obviously a spectrum, and again like cancer, autism is most probably more than one disease. I would point out to those who insist that their child's autism is caused by mercury in vaccines, that now schizophrenia is classified as a developmental disability. It typically manifests itself in adolescence. Would anyone argue that, say acne meds cause schizophrenia? I doubt it. Sometimes coincidences - as in autistic symptoms appearing at the time of vaccinations - are just that: coincidences. and the child's brain has just reached the stage of development where a particular type of autism appears. The scientific evidence just is not there regarding thimerosal.
Be VERY careful about labels of intellectual impairment. My son is painfully aware that many strangers and even some people who know him, think he is severely retarded. I'd be willing to bet that like my son, your sister silently taught herself how to read and tell time, and must daily live with the knowledge that she is smarter than all of the people around her but can't show it.
I do not understand why people think there are few autistic adults? There are very likely 1 in 150 autistic adults, but they had other names (mental retardation, schizophrenia, brain disorder, seizure disorder, among many other labels, many of them very long and tedious with all kinds of symptoms linked together, like brain disorder with obsessive-compulsive disorder, speech disorder, and seizures). No one missed them. They were diagnosed with one of these labels, and often institutionalized and seldom educated. The fact that we have autistic people in our schools today is a testament to the progress we've made. And anyone who says that there are few autistic adults just doesn't understand how child psychology and child psychiatry have changed over the years. A recent peer reviewed article reported on a sample of about 400 adults and just over 50% had a previously undiagnosed autism spectrum disorder. No one missed them. They had other diagnoses. Some, like many with Asperger's, never had a diagnosis at all! True, it is hard to count adults (they are in our community rather than in schools where they could be seen and counted). But they are out there, and they are starting to speak up, more and more, just like Amanda.
The explosion in the number of cases of Autism has more to do with diagnostic criteria and advances in diagnosis than an actual increase in cases.
Also, there is absolutely no solid evidence of a link between Mercury and Autism. I think that a lot of parents are just going through a grieving process and it is easier to blame what's happening on something than to face it head on. I don't blame them... I have a brother with Autism (he is 19) and it would be much more comforting to me and my family to think that Mercury caused it, than genetics, but we can't because it's just not true.
Good luck to everyone out there with people in their family on the spectrum, it's hard. But I think that we learn so much from those in our lives who are on the spectrum that we're better people for it.
People think there are few autistic adults because there are few. Diagnostic substitution is *not* accounting for all of the new cases. Just check California. If this was all just people being reclassified there would not be a problem that Congress would care about, and fund with a huge sum of money.

In a couple more years, all these people saying there is no epidemic are going to be feeling real foolish. The rate continues to increase and just looking at school enrollment, it has gone to 1 in 70 from 1 in 150, the number from a few years ago.
Actually, there are autistic adults everywhere I look. We often look different than autistic children, though, and the diagnostic criteria even still are normed on children, and particularly male children at that. As we grow older, we retain the cognitive and perceptual traits that make us autistic, but we might look very different in terms of our outward appearance.

Autism was not in the DSM until 1980. The diagnostic criteria in 1980 required that a person have a completely pervasive lack of contact with people. These criteria are not true of autistic people in general, and have been shown in studies not to be true, they are an assumption on the part of others. So no autistic people actually met the 1980 criteria although some got considered to out of ignorance.

In 1987 the criteria broadened, and then in 1994 there was a new classification called Asperger syndrome for autistic people who learned to speak and do some other things at more or less the usual rate and manner.

The 1 in 150 figure includes people diagnosed with autism, Asperger, and PDD-NOS, at the very least. That encompasses far more people than would have ever met the 1980 or even 1987 criteria for autism.

I run into autistic adults all the time. Some of them were diagnosed as children and then told that they were cured once they learned to talk. Some of them blend in well enough on a superficial level that only someone who knows what to look for can see they are autistic. Others seem obvious to me but have any of a number of psychiatric diagnoses instead. Others are physically disabled and everyone was paying attention to that and ignoring the fact that they are autistic.

Also, the definitional changes take time to catch up. There are still doctors out there who honestly believe the 1980 definition is the only "real" autism, and worse there are still a few holdout psychotherapists who believe in the refrigerator mother theories. Just because the definitions have officially changed doesn't mean the professionals have all caught up yet.

But it is really very easy to find autistic adults. We are everywhere. The trouble is we are ignored. That means that many of us end up living on the streets, or with our parents, or in halfway houses, and are not counted as autistic. But I bump into autistic adults all the time and have a hard time believing the idea that we're just not here. And when people say we're just not here, then we don't get the assistance we need, and a lot of us end up in a series of unpleasant situations without enough support.

I co-run a mailing list for autistic adults dealing with daily living issues. Right now we have 192 members. I'm one of the lucky ones who actually gets the assistance I need. Most people there don't. Many people there are not diagnosed but face the exact same problems as those of us who are. We're basically a very ignored bunch of people.

And ignoring us serves a purpose for some people, too. If we don't exist, then they can say that the numbers have increased. The problem is, while they are getting all the assorted panic and sympathy associated with an epidemic, their rhetoric causes people to not notice we exist, which in turn causes us to lack the assistance that a lot of us badly need.
Once again, the anti-vaccine crusaders continue to try and hijack an entirely separate subject by using their Jenny McCarhty approved 'Google PHD's' rather than science.

The so called 'lack' of autistic adults can be explained by the fact that no one has actually scientifically looked for autistic adults. If you don't look, you won't find.

And then, just recently, by searching PubMed we can see that someone actually did look. And what they found was that in existing centres, that adults with intellectual disabilities could also be diagnosed with autism in 50% of cases.

Seek and ye shall find.
I want to thank Dr. Gupta for this fascinating look at the world of Autistics. As I can atest to, there are many areas of this disease and affects people in many different ways. I am an individual who lives with Aspergers Syndrome on a daily basis and while it is difficult most of the time, my mom can say that it has been a blessing, as I have taught her what it means to live with it on a daily basis.

I do find it difficult to function in a world that fails to see that while I can function normally, there are things that will always bother me, no matter what the situation may be. It will always be a constant struggle to maintain a "normal" appearance and while I accept the challenge, I don't necessary like it. I would rather live in my own little world, but like I have said beforehand, I have to conform to society around me, rather than society conform to the needs that I needs that I have.

Once again, I thank you for the report.
My 55 year old brother is autistic. I am 62 and his only family.
While I am totally sympathetic to the autistic child, the parents are usually in the picture for the child. The autistic adult is seldom mentioned. The autistic adult is often alone in the world.
Please do not forget the autistic adults, in some cases they need more social support than the autistic children. Plus they grew up with no understanding of autism and little community support.
It is so true that Autistic adults are often forgotten. Even people who are 19 or 20 are forgotten. It is as if as soon as they are out of the school system and no longer classified as "children" they become less important.
While I understand the need to help those who are children, I am mystified by the lack of support and services for adults. What is going to happen to those who are children now in say 10 or 15 years? If things don't change, we're just going to have a whole lot of Autistic adults with absolutely nothing to do.
Tell me, how do you "normal" people feel when you have nothing to do? Doesn't it make you feel worthless? Take a second and think about that instead of arguing about if Mercury causes it or not. The fact is, it's here, now how do we deal with it?
Well lets hope that the school system for this generation and future generations of children with the diagnosis of autism does not fail them to the same extent that they have failed past generations. Personally I would be rather out of the system which failed me as a child and have nothing to do with it. As an adult I have trod everything I see as autism into the ground. I dug a whole and I buried it and said a prayer over it and sent it on its way.And yes it is hard but I would rather see myself as part of the world than live in the world of autism. In fact I am more comfortable in the world than in the world of autism.
One can always find something to do. Lots of people are on their own; do not have gainful employment and one has to accept the fact and make the best of the situation. The more one pushes
forward the boundaries the more one is able to see that it can be done.
It has nothing to do with hijacking for anti-vaccination politics. The whole idea that autism is constant and has never increased is just wrong. Classifying people in a shelter as autistic is fine - that proves that with the new criteria many more people can be called autistic. That was not disputed, and reclassificiation accounts for the vast majority of new autism cases. But.. It does not account for all of them, and this is the reason that Congress cares, California cares, everyone cares. Only a few die-hard scientists think that diagnostic substitution accounts for all new cases of autism.

The support from biomed diet changes works the same for adults as for kids. The biomed work that parents are doing for their kids is applicable to autistic adults in the exact same way. Asking for support for adults is going to get very little, just like autistic kids get. People have to do things for themselves right now.
My son hit all his developmental milestones until 21 months of age. Within 48 hours of his getting the (required) vaccinations his eye contact stopped, his words stopped and we lost him. For 5 years we were in denial about the mercury in vaccines. It was 5 LOST years of his life. Since then we have opened our minds and eyes to the FACT that Thimerasol is 49.6% Ethyl Mercury by weight. MERCURY IN ANY FORM IS THE SECOND MOST TOXIC SUBSTANCE KNOWN TO HUMAN BEINGS ON THE FACE OF THIS PLANET!!! For the past almost 2 years now we have been treating him for what we KNOW to be true HEAVY METAL POISONING. We have seen tremendous improvements. Although he is still not in the mainstream we are closing in on it every day. Thanks to all the non mainstream physicians who admit to the FACTS about this whole mess.
I wanted to drop this article into the discussion. I will be back with more of my own thoughts in a little while. This article makes very much sense to me. The internet is my world. I live here.

http://www.wired.com/wired/archive/9.12/aspergers_pr.html
"The problem is, while they are getting all the assorted panic and sympathy associated with an epidemic"

panic and sympathy is not what parents are after. They want insurance to pay for treatment. This is what you would want as well. The adults with autism will all benefit from this.

Of course, maybe all of the funding for autism research will lead nowhere and autism will be called a genetically predisposed condition. Good luck getting treatment covered if that happens -oh wait, that is the current situation.

Give it a couple of years and we'll see how it plays out. My money is on the environment being a driver since biomed treatment is working for my kids but hey, back whatever horse you want.
Mercury has been replaced in almost all vaccines but the rate of hyperactivity/attention deficit and autism seems to be steadily increasing. It seems to me that if one were to examine the corresponding toy and other "safe'imports to this country, especially at products for our children there might be a strong correlation. Has this been examined?
We are going to discover that, like cancer, this has many causes. I have schizophrenia in my family and was given pitocin to induce labor. Years later, that became suggested as a possible trigger in my son. Then again, my first husband is the poster boy for Borderline Personality Disorder. My son may still be learning to toilet at age 23, but at least he doesn't ambush me with childish demands. (Well sometimes, but I am his Ma!) Anyway, my ex-sister-inlaw has 3 children, one with autism, 2 with ADHD-oppositional defiant. In addition, my son was born in Seattle in 1984, where there is a cluster. Poor guy never stood a chance!
I live in Montreal, have high functioning but severe autism along with Tourette's Syndrome and personality disorder and have been following all the CNN autism coverage. I am particularly interested in Amanda Baggs because I am an adult contending with many of the same challenges she faces each day. I live in that little-known noman's land between high and low functioning autism.

Like Amanda, I don't tolerate too much stimulation and get frustrated easily. The household chores others take for granted are especially irritating because poor hand coordination and visuospatial deficits make it impossible to to them properly. I can't even pour a drink without making a mess and just make more messes with my fruitless attempts to clean up the spills. Although I speak fluently, I can't carry on a conversation without getting into an argument because I still have the social and communication skill impairments that make it impossible to get along with all but the most accommodating and understanding people. For that and other reasons, making phone calls is frustrating. Although I have normal intelligence, my short attention span, inability to focus and weaknesses in higher order thinking skills render all tasks that require mental effort difficult. Even activities I usually enjoy and do well can become frustrating if they make demands on weak skills or something goes wrong.

Like many autistics, I have sensory integration disorder. When I get frustrated, my hypersensitivity to touch, pain and discomfort escalates and spreads to sounds. When I struggle with difficult tasks, the sounds two things make when they touch each other irritate my nerves so much I feel like worms are wriggling inside of me. On my worst days, my hyperresponsiveness turns into a generalized sensory irritability. Even when I'm not frustrated, I can't tolerate much stimulation of any kind. Montreal's big city hubbub, mobs and hectic pace of life drive me crazy. During the past few years my part time medical library assistant grew more demanding. The constant pressure I now work under, combined with austere working conditions, frequent work routine disruptions and intolerant co-workers are wearing my nerves out. With my workplace in a state of flux, terrifying storms hitting every few days and Montreal often in crisis mode, I am always one step away from a meltdown.

When I saw Amanda hitting her head and heard her screaming in the bathroom, I thought of the fierce rages my own frustration and sensory irritability set off when I struggle with kitchen chores, try to organize my belongings or search frantically for misplaced items. In the heat of frustration I enter the realm of primitive bestiality where rational thinking shuts off and primal animal rage takes over. Like a raging beast I stomp, kick, bite my arms, break things, rip papers to shreds and mimic the sounds that irritate me. After the day's battles are over, I emerge all bloodied up as if I had been fighting off a hungry lion.

I have a long history of getting into trouble for breaking kitchen counters, furniture and other fixtures during rages set off by chores at home and in apartments I lived in after I moved out. I lost count of the phones I broke when repeated busy signals, rings and voice mail messages set my nerves on fire during attempts to reach people who weren't there.



After over 4 decades of constant frustration, overstimulation, hectic big city living and responsibilities that exceeded my capabilities, I developed the burnout Amanda Baggs wrote about in an online article I found on the Web. The more I do frustrating tasks, the more irritable my nerves become. My nerves are so worn out they feel like they're inflamed. Even when I'm not in the midst of a rage, I'm chronically cranky. People I know notice that I'm more hostile than I used to be. Just getting through the day and keeping up with my job use up so much energy I have none left for the social niceties I do know. During especially stressful periods like winter, I consider myself lucky if I can even push myself to comb my hair. I feel a fierce urge to simplify my life, cut out difficult responsibilities, do less and stay away from stimulating environments. In their misguided attempts to find ways to improve my quality of life, people suggest filling my days with even more work and learning experiences, when what I really need is less.



I am stuck between a rock and a hard place because I'm in dire need of something to soothe my irritated nerves but have limitations that render all the available coping strategies useless. None of the drugs autistics take to control mood and behavior problems agree with me. Group homes and other residential care arrangements are out of the question because the regimentation and lack of privacy would just make me more miserable. I am too depleted to tolerate the rigors of cognitive behavior therapy and related interventions. I don't even have the wiring needed to make these methods work. I am one of those autistics who lack a sense of humor and thus can't use humor to help me cope. I also lack the cognitive and other skills needed to get anything out of other stress-relieving diversions like religion, crafts and reading. In fact, the brain dysfunction I was born with left me unable to even develop real interests.



There are ways to give me the peaceful life my nerves crave, but none are possible given my present circumstances. Exercise helps, but the activities I enjoy and can do despite coordination problems are impossible to get here most days. The best thing for me would be to relocate to a small city with a dry climate where can I bike all year long, but I can't afford such a move. Daily help with the frustrating chores would end the rages, but I can't even afford that. Montreal has no support services at all for semi-autonomous adults like me. The sad fact is that I have no support system at all. I feel that lack of support hastened my burnout and am afraid to think of what the future will bring.



Marla Comm
Chris asks, "Do you know an autistic adult?" Yes -- I know hundreds, from all regions of the spectrum. I am the vice-president of the Asperger's Association of New England, a director of the Autism National Committee, and a board member of the Massachusetts chapter of the Autism Society of America.

I'm also the father of an autistic son in high school and a daughter in the broader phenotype in college.

Listening to, learning from, and working with autistic adults has tremendously helped us help both our kids grow to their maximum potentials.

An anonymous poster says "who really cares what Amanda's opinion is on what parents should do". That couldn't be more wrong. Her advice to seek out and connect with adults in the autistic community makes all the difference in the world.

In our case it was very much a natural and logical thing to do: I am an Asperger adult, married to a loving and patient nonautistic spouse. I find myself serving as a bridge and a translator in many situations -- for my son, for my wife and daughter, and for many nonautistic people who interact with my son. And also for other individuals and families in my lay leadership work with the three organizations I listed above.

Many of the autistic adults we have met over the years we've been parents have helped and enriched that process with their own experiences and wisdom.

Some resources for individuals and families who want to connect with adults in the autistic community:

Autism National Committee, whose 2008 conference will be in Michigan

The Autism Acceptance Project in Toronto

Autism Network International, and its annual conference/retreat, Autreat

The Autism Hub, a consortium of bloggers to which Amanda Baggs belongs
autistic people rule, accept us now, the only cure we need is to cure society of there ignorance
from a middle level autistic and im prouf to be me ;-)

causes are NOT by vaccines, you are born autistic from MULTIPLE gentic factors, chemical and other aspects of nuero, physical, biological make up

we are people we are aa race a culture of people who need to be accepted, learned about and respectd as part of the great diversity and uniquness of mankind ;-)
Where are the autistic adults? Well we are out here. You might want to check out my book, Life and Love: Positive Strategies for Autistic Adults (AAPC 2006) to get an insider's view of what it is like to be an adult on the spectrum. Also check out the Autistic Adults Picture Project to read about our lives in our own words.

Regarding all these swirling debates about vaccines, mercury, etc. I think we need to sort out our thinking. Autism is genetic, it runs in families. Autism has been around long before vaccines and pollution.

If parents really are seeing kids damaged by vaccines or anything else, this diserves study, but let's separate out the two very different etiologies.

If you take a 2 year old and the two year old suffers suddenly from some insult to the brain, what will you see? He will probably lose language, maybe he'll suddenly have sensory issues or lose social skills. It looks a lot like autism, but science doesn't know yet what it is. Some studies such as the one at the University of Rochester on diet and development in toddlerhood will eventually shed light on all of this.

Until then, we have to focus on what we know. Autism is neurobiological, it is the way the brain processes the world, and it doesn't go away. That doesn't mean there is no hope. Many of us can increase our communication and adaptive skills, and all of us can live in the community if we want to.

You don't see Autistic adults that much per se because many many of us were mis-diagnosed or not diagnosed at all as children. But we are here. With your assistance, tolerance, and understanding, we can live decent lives that we find worthwile and enjoyable.

Zosia Zaks
Baltimore Coordinator
ASAN - Autistic Self-Advocacy Network
Zosia, I will take it one step further and encourage everyone to embrace and celebrate the strengths of people with autism. The brilliance is to be found in seemingly unlikely places. We are all richer when we listen past the mannerisms to hear the real voice.
Great reporting Dr. Gupta. Your story was fascinating and hopeful for those of us who always believed that children with autism were nothing but vegetables. Your report shows us that there sure is a lot of intelligence within and from there a lot of hope.
Oh, ok, so the Autistic Self-Advocacy Network says there is "real" autism and autism caused by vaccine damage. But we should all forget about that fact and just focus on paying for assisted living communities. Hmm... wouldn't that mean that we would be assisting more and more kids as the autism (not "real autism" though) rate increases.

Maybe the prudent thing to do be to find out how the vaccines, pollution and other factors cause the damage and then try and keep it from happening. This way we would know for sure that there is no "real" and "psuedo" autism and all the adults and kids could be treated with the same protocol - one that works and helps them impove their quality of life.
I am troubled that here, as in politics, people are being attacked for their views and beliefs. It is not hijacking to post an opinion.

I work with autistic children. I am a firm believer in heavy metal
( mercury's)role in autism, as well as environmental issues.

Are there any causes of autism? probably. But since the spectrum is so broad, many problems fit into it.

Whatever works to help your child is the route to take. Clearly Jenny McCarthy's approach was right for her child. There are other paths to take, that will help other children.

Let me tell you.. we do not discuss the causes of autism where I work, but the younger parents there are very careful with vaccinating, and take an alternative approach. They simply avoid discussing it.

And parents.. approach your schools about their environment. All of the schools that I know about have bright florescent lighting, use chemicals for cleaning and have a lot more noise than is comfortable for the autistic kids. Background music is not for everyone.

It breaks my heart when i see the number of kids whose parents take the diagnosis of autism as a reason to not try . They do not try to teach acceptable behavior .. ( we do, often it works ) potty training, eating , sitting or non-aggressive behavior. Imagine what a difference it would make for these kids if issues like this were addressed pre-school.. instead of waiting for the school to do it in less that ideal surroundings.
I have worked as a speech-language pathologist for agencies that provide group homes, day treatment programs, and schooling for autistic children and adults with autism and other developmental disorders. I have served on the board of an agency that provides group homes, day treatment and other services for children and adults with autism. I advocate for several adults with autism, and I can tell you that creating more group homes for these folks will give them a place to live, but is not likely to give them the life they want and deserve.

Although some of the nicest, most caring persons I've ever known work in such places, there is little likelihood that the group home setting is able to offer residents the "freedom" they seek.
No matter what you call it, it's congregate care. We've just gone from horrible large institutions to more attractive very small institutions.

I was interested to see that Amanda and D.J. both used that word "freedom". As it happens, I have an autistic friend who has expressed (via Facilitated Communication) her great wish for freedom for the past 10 or 12 years. She tells me that communication is freedom, being able to live your life as you choose to live it is freedom.
My friend, unfortunately, does not have the "freedom" to communicate as often as she'd like. In fact, for many years not one person in her home or school gave her the assistance she needs to communicate. The agency that ran her home and school refused to use Facilitated Communication, the only method of communicating that has worked for her. If she can't communicate, she can't control her life.

Fortunately, the agency that operates her current group home has no such policy. Some of the staff in her home and in her day program have learned to facilitate her. She does have some communication and some control over her life, although not nearly enough.

We need to develop more creative and satisfying inclusive living situations for my friend and the hundreds of thousands of others like her who currently are bored, frustrated, and despondent over the lives they are living.

Thank you, Dr. Gupta, for bringing attention to the many autistic adults who have been invisible for far too long.
I have heard people state that they see parents not teaching their kids. Not one of those people was ever in a position to know that for sure, and in fact all have been wrong. At 23, my son is bladder incontinent and sometimes acts up in public. that doesn't mean nobody tried, or that we do not continue to teach every single day. On 3 to 5 hours' sleep an night, thank you very much. You have no business teaching other peoples children, if you are going to pass judgment. I believe you will not try as hard with a kid if you think the parents aren't putting in enough effort.
For anyone that wants to read more about the mercury autism issue please read "Evidence of Harm" by David Kirby. If you don't believe what he is saying in the book get on google and type in Deadly Immunity, then read the article by Senator Kennedy. When reading the article pay particular attention to the comments made by the individuals during the Simpsonwood Conference.
I am throwing down the gauntlet - anyone care/dare to pick it up?

Autism - My Insider's View:

Autism is:
A mystery - a dilemma - a puzzle - an enigma - a conundrum - a curse
- a gift - a "disease" in need of a "cure" - CURE HAM, TREAT PEOPLE!
I do NOT have a DISEASE - I have DIS-abilities as well as ABILITIES
that cause UNEASE - generally to others! Please feel free to discuss, challenge, comment, prognosticate, pontificate, define, etc.
Yours in truth,
Sharisa Joy Kochmeister, President of AUTCOM, but first and FOREMOST
and ALWAYS a HUMAN BEING with HUMAN NEEDS, EMOTIONS, DESIRES and
FRUSTRATIONS!
I will pick up the gauntlet to address the "relationship" that occurs between the facilitator and the person typing whether being provided physical support or just sitting in close proximity.

In my experience individuals with severe autism perceive things more through intuitive senses than their disrupted physical senses. Most need a catalyst to communicate.

It is my hope that scientists will begin to use brain imaging technologies to locate neuro-anatomical
areas of the brain stimulated during the reception
of intentional thought sending from partners. By
exploring this anomaly, I believe much information about the potential of human consciousness can be learned. The phenomena is more complex, but this would be a start.

Please let me know if I may be of service.

http://ezinearticles.com/?expert=Mary_Ann_Harrington
Mary Ann,

I am fascinated by your reply and want to know more, please e-mail me.

Sharisa Joy
Why do we continue to act as though Sharisa Kochmeister is speaking to us? Despite the claims that Ms. Kochmeister is an "independent communicator," she is not. In the world of facilitated communication, "independent" can mean that someone else stands next to you, holds your keyboard, talks to you during facilitation, and corrects your supposed errors. This is why CNN's facilitated communication star Sue Rubin is labeled "independent." This is why Kochmeister is said to be "independent" even though she requires the presence of her facilitator/father--supposedly for "emotional support"--but really for cueing.

There has never been a controlled scientific test of the validity of Ms. Kochmeister's communication done or published in any journal. She's been on TV shows and at conferences. But being on "How'd They Do That" is a performance, not proof.

The absence of any controlled testing is telling, suggesting a long-standing deception. So is Mr. Kochmeister's steadfast refusal to settle the matter with a test. This has been going on for over 14 years. As far back as 1993, Jon Palfreman, producer of the PBS Frontline documentary "Prisoners of Silence" noted:

"From the footage I have seen of Jan and Sharissa, there are several forms of cueing going on. If you slow down the video, it is clear his hand moves before hers. Also, he touches her forearms and legs. If Jan and Sharissa Kochmeister would agree to some kind of controlled testing, say a message-passing test, I would still be interested in filming them." (Syracuse-Post Standard, November 13, 1993)

If Sharisa Kochmeister was really capable of doing what is claimed for her, why hasn't she settled the matter with a real test by real scientists? Seems like she'd be the first to call Howard Shane to do a real validation--to silence the skeptics rather than run from them. Instead, all we get is empty claims about her passing questionable validity tests posted on blogs and websites.

The stakes in FC are too high for grandstanding. Ms. Kochmeister is said to be the President of Autcom. If she is genuine, she has some responsibilities to back up her claims now that she's heading an advocacy organization. We believe that there have been no tests because there is nothing there. If FC works, it is time to prove it. We've been waiting a quarter century for even one properly controlled scientific study showing FC works reliably without facilitator influence. So far we've gotten nothing but people using their children as puppets in a cruel charade.
You obviously have no experience with FC. So what if they need someone touching them? It's easily tested in daily life. My son wrote a note through me to his housemate, who wasn't feeling well. A week later, the housemate mentioned the note while typing with someone who knew nothing about it. Proof positive. We don't care what you think. You're expendable.
Anonymous has left a new comment on the post "Autism: Finding Amanda":

Why do we continue to act as though Sharisa Kochmeister is speaking to us? Despite the claims that Ms. Kochmeister is an "independent communicator," she is not. In the world of facilitated communication, "independent" can mean that someone else stands next to you, holds your keyboard, talks to you during facilitation, and corrects your supposed errors. This is why CNN's facilitated communication star Sue Rubin is labeled "independent." This is why Kochmeister is said to be "independent" even though she requires the presence of her facilitator/father--supposedly for "emotional support"--but really for cueing.

There has never been a controlled scientific test of the validity of Ms. Kochmeister's communication done or published in any journal. She's been on TV shows and at conferences. But being on "How'd They Do That" is a performance, not proof.

The absence of any controlled testing is telling, suggesting a long-standing deception. So is Mr. Kochmeister's steadfast refusal to settle the matter with a test. This has been going on for over 14 years. As far back as 1993, Jon Palfreman, producer of the PBS Frontline documentary "Prisoners of Silence" noted:

"From the footage I have seen of Jan and Sharissa, there are several forms of cueing going on. If you slow down the video, it is clear his hand moves before hers. Also, he touches her forearms and legs. If Jan and Sharissa Kochmeister would agree to some kind of controlled testing, say a message-passing test, I would still be interested in filming them." (Syracuse-Post Standard, November 13, 1993)

If Sharisa Kochmeister was really capable of doing what is claimed for her, why hasn't she settled the matter with a real test by real scientists? Seems like she'd be the first to call Howard Shane to do a real validation--to silence the skeptics rather than run from them. Instead, all we get is empty claims about her passing questionable validity tests posted on blogs and websites.

The stakes in FC are too high for grandstanding. Ms. Kochmeister is said to be the President of Autcom. If she is genuine, she has some responsibilities to back up her claims now that she's heading an advocacy organization. We believe that there have been no tests because there is nothing there. If FC works, it is time to prove it. We've been waiting a quarter century for even one properly controlled scientific study showing FC works reliably without facilitator influence. So far we've gotten nothing but people using their children as puppets in a cruel charade.

My reply is this:

Whomsoever you are - Anonymous certainly proves you choose to not let people know - you need to do your research before pontificating. I passed court-ordered double-blind testing, Dr. Howard Shane's efforts to disprove me were considered ludicrous by the court to the point at which he was court-ordered NOT to speak about me publicly... I have passed tests in school, been an expert witness in court cases, achieved 3 college degrees - apparently you consider yourself more "expert" than any of these people and institutions without even knowing me. As for Palfrey and "Frontline" - they advertised their OWN program by sending out postcards of me typing independently then chose not to show it on their show so as not to discredit their own negative yellow journalism - and I answered them publicly at a TASH convention on-camera. Countless psychiatrists, psychologist, neurologists, speech and occupational therapists, teachers, professors, medical doctors, students, graduate students and universities have trusted my reality enough to accept controlled double blind testing as court=ordered as proff - why are you so clearly AFRAID to so so, A-Nonymous??? As for Mr. Kochmeister, my father, he never refused any test that was done on me, even though he wanted to more than once - my insistence on proving myself was enough for him to let the tests happen despite the emotional and physical drain on ME. I am not a "puppet in a cruel charade+ - are YOU? What is your agenda, A. Nonymouse? I have proven all I need to in as many arenas as possible... what have YOU proven and where? Do you want to talk to the court-appointed psychologist who tested me over a decade ago? Do you want to accuse my college and university of awarding me degrees under false pretenses? How about the Autism Society of America for making me a member of their council of advisors on the Spectrum? Autism Perspective? The United States Congress? Senators? How about the awards I have won? Are all the agencies (including the President of the United States) granting me these honors misguided fools in your purview? Why not go public, A. Nonsense?

Leave alone what you choose not to understand, research, and accept - or do the groundwork before making spurious attempts to discredit it and people whom it has helped and continues to help.

Thanks for continuing to be attitudinally challenged enough to prove me correct.

Sharisa Joy Kochmeister
To Kacky:

Thanks for what you said.

Sharisa

Expendable? A. Nonsense chooses to be Unknown... how can the gutless be expendable?
I am directing my comment to whoever is writing under the pseudo-name (or on behalf of) Sharisa Kochmeister. A recent statement in this blog stated: “I passed court-ordered double-blind testing, Dr. Howard Shane's efforts to disprove me were considered ludicrous by the court to the point at which he was court-ordered NOT to speak about me publicly...

This comment is absurd on many levels: First, no such double blind tests were ever passed – and never will be; second, no court ever issued me a gag-order - otherwise I would be unable to offer this comment in order to clarify the record; and, third, simply saying you wrote something is not proof that you actually did for, after all, that requires a legitimate test of authorship.

Controlling the movements that lead to writings attributed to unsuspecting, innocent and illiterate people was a regrettable chapter in the education of persons with special needs a decade ago and continues to be blight on legitimate efforts to bring about independent communication today.
My reply:
Why are you closing your mind to all possibilities because someone defeated you and you know that the testimony that I passed blind tests is court record and the judge refused to allow the specifics of what you tried to demand as long as I TYPED INDEPENDENTLY IN CHAMBERS in front of the judge, the law guardian and the court-appointed psychologist who administered the double-blind message passing tests that were identical in format and methodology to the tests you showed on TV? These, in fact, were modeled directly from your testing reports and protocols; and try to remember, Dr. Shane, the judge decided to disallow your invasive, exploitive testing and to allow my testimony. Also, try to recall that the accused chose to plead no contest BEFORE the scheduled hearing date after the judge told her attorney, who had hired YOU that he'd accept my testimony. To deny that a gag order was issued at the time seems convenient after you haven't dared to speak publicly or privately about me or to me in the 12 years following that and simply stating "saying YOU WROTE ANYTHING YOU WROTE" is grounds to state that these aren't my statements is chicanery, Dr, Chicane - how, for, instance do I know you are the one really writing this blog - perhaps it's someone using your "pseudo-name". I patiently request that you please desist the name-calling and false accusations before I am tempted to take YOU to court for libel and slander. Being the lady I am, I never attacked you or your reputation as a doctor or as an augmentative communication "expert" in print or in public or even in private, despite many requests that I do so. I have said you were wrong about ME, and that's apparently been an extremely tough pill for you to swallow in the past 12 years, or you wouldn't resist to such an unfounded, baseless attack on me, my therapists, my family, my junior high school, high school, community college, university, the many organizations that have asked me to advise them and other medical professionals in Psychiatry, Neurology, Family and Internal Medicine, Pharmacy, Opthalmology, Augmentative Communication, Physical and Occupational therapies, etc, etc, etc ad infinitum.
Since that court case, I have received a high school diploma, managed to complete 3 college level degrees thus far with honors by typing and test-taking with proctors watching quite carefully (that's their job!) as well as on my own, maintained an A average throughout high school and college, won college, university, presidential and gubernatorial awards and appointments, testified in Congressional hearings, and even testified as an expert witness in a trail regarding FC in CT in which you were also involved and I was deposed in order to refute your testimony. Convenient of you to neglect to mention that or the win in my court case. I have also won advocacy awards, been published, had music I've written (explain that one, please) and been accepted by other experts in augmentative communication - in fact that's how I qualified for Medicaid funding for both of my AUGMENTATIVE devices. I doubt that even YOU can deny the expertise of others in your very own field.
I have repeatedly defended people's freedom of speech just as I will defend yours - but I will neither defend nor permit your perceived right to attack me on a personal level. There are laws against that - as I'm sure you know, and I doubt you'd ever want to meet me in court, Howard.
One of us has grown and matured since last we met, Dr. Shame {misspelling intentional), and I am proud of the fact that I have done so without once stooping to your level of personal attacks on other people and their rights - can you TRULY say you have done the same? If and when you CAN do so, I would be only too happy to continue an exchange of HONEST ideas with you. Otherwise, this will, indeed, be the last thing I ever choose to say either to you or about you outside a courtroom; because, frankly, it is both a waste of time that I could use far more positively and gainfully and because your blinders and earplugs and mental blocks of prejudice and discrimination against me and others who have proven you wrong are far too thick and impervious.

I hope you eventually get what you so richly deserve, just as I do for ALL people -
Ms. Sharisa Joy Kochmeister,
AS, Humanities and Social Sciences, 2000, SUNY Rockland;
BA, Sociology and Psychology, 2004, Denver University;
Unanimously elected President of the Autism National Committee;
Appointed Member of the Panel of Advisors on the Spectrum for the Autism Society of America;
advisor and contributing author to Autism Perspective,
Member of the Executive Committee of the Colorado Developmental Disabilities Council, along with the Legislative and Public Policy and Planning and Grants Committees;
Board member of COAPSE;
and, most importantly a free and unique human being and humanist who believes in giving everyone the FULL benefit of the doubt unless and until they prove themselves
beyond doubt and/or its benefits.
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