Friday, March 14, 2008
The myths of Autism
By A. Chris Gajilan
Senior Medical Producer
Over the past few years, CNN Medical News has provided extensive coverage of autism. From the stories of parents and children living with the disorder to the latest science on possible causes to a vast array of treatments and therapies, we have followed most major developments in the field. Every story we report on autism has been stirred an incredible amount of passion from our viewers and our readers.
Now it's your turn to have some of your own questions answered. CNN is planning a comprehensive day of coverage in recognition of World Autism Awareness Day on April 2. The latest statistics from the Centers for Disease Control and Prevention say that at least 1 in 150 children are affected in the United States.
In a report called, the "Myths of Autism" we hope to dispel any misperceptions about the disorder and the people who live with it. We also want to be very clear that there is still a great deal the scientific community has yet to learn about autism and its related disorders.
Here are some ideas that we hope to address:
- Every autistic person has savant abilities in some area such as Dustin Hoffman in Rain Man. Eg: math or memorization
- Thimerosal in vaccines is the main cause for autism.
- Autistic adults will never be able to live on their own. They will always need assisted living care.
Do you think that there are prevailing myths related to autism? What are they? What questions do you need answered?
Does autism touch your life? Tell us your story here:
Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.
SOME adults with Autism Disorder will never live on their own. That is not a myth. That is a reality which seldom is featured in the news.
> Every autistic person has savant
> abilities in some area such as Dustin
> Hoffman in Rain Man. Eg: math or
While its not true that every autistic person has savant skills, its very common to have substantial "peaks and valleys" in skills. People recently have been obsessed with the valleys and have tended to disregard the peaks. But if you look at history, its people with the peaks in skill that have shaped the world. For example Einstein had a substantial speech delay and other autistic traits. Historically "eccentric" and "genius" have very often gone together in the same sentence.
> Autistic adults will never be able to
> live on their own. They will always
> need assisted living care.
This is the most destructive myth of all. If as most serious researchers conclude the "epidemic of autism" is really an epidemic of diagnosis, then its obvious that most on the spectrum will be able to live on there own.
Instead whats needed is more awareness and reasonable support for neurological disabilities. You will never see someone in a wheel chair turned down for a desk job on the basis of the disability. But many highly competent people who are easily capable of doing the job in question are turned down on the basis of eye contact, tics, or the like.
Among the myths I'd like to see dispelled are the ideas that ASDs are medically untreatable, that they are psychiatric/psychological in nature, that affected people are retarded.
Thank you for being willing to step into this enormous issue, which permeates government, medical research funding, Big Pharma, politics, and so many other aspects of this country, more and more harmfully.
Will you cover diet and autism? There are parents and others advocating megadoses of vitamins, omega-3 fatty acids and stating that nutritional supplements are not harmful....this is NOT true - as a Registered Dietitian I would like to believe in the GFCF diet and supplements, but I feel there are many taking advantage of parents (vitamin sales people)some spend hundreds of dollars a month and dietary supplementation can cause harm - a fair and balanced presentation of the hype versus facts is greatly needed....
As an autistic person and the father of an autistic kid, I see a pair of myths which need addressing: one is that the only useful approach to autism is to "cure" it, and the other is that "we autistic folks are fine just the way we are". I don't feel either of these is true. There can be severe behavioral aspects of autism which ruin quality-of-life, and I'm not into "noble suffering" - mine or anyone else's. At the same time, we on the autism spectrum can bring alternative viewpoints and thought processes to bear on problems that everyone deals with. I feel society needs us autistic folks, and it is our responsibility, and opportunity, to interface as best we can with it for the benefit of all.
One of our twin boys has been recently diagnosed with ASD right after they turned 4 years old. This diagnosis was given to us on the SAME day that the pediatrician proceeds to give the twins 5 more shots when they could have SPREAD OUT THOSE VACCINES FROM AGES 4 to 6 Years old!
Now the twins won't need another vaccine until they are 11 years old!
I've come to realize that: Vaccines ARE NOT ONE SIZE FITS ALL
I would like it if people understood that Autism in not the same as mental retardation. There is nothing wrong with the label of mental retardation or cognitive impairment for people who are but more and more we are finding that once people are given the ability to communicate through keboarding, writing or speaking language, they understood everything all along, just couldnt share it.
Please dont stare, talk about or talk down to someone with Autism (or anyone else for that matter). They are probably just as smart as you are and understand what you are doing and saying. The old studies that state that up to 70 percent of people with Autism are also MR are outdated and need to be re done using new models and communication devices.
I have a 14yo son with autism. Here are some myths I think you should investigate:
1. Genetics are the main cause of autism
2. People can't recover from autism.
3. It isn't possible for schools to give autistic people a really good education.
4. Autism is not an epidemic.
5. Mercury (Thimerosal) has been removed from all vaccines.
By the way, the myth about thimerosal you mention is a misleading one. Many of us in the thick of researching the biomedical side of autism are quite sure that mercury in vaccines is only one factor in many, albeit a large one. We don't think it's the only cause. We know that other toxins and genetics are also involved.
Did you know that the presence mercury makes the body effects of other toxins (such as lead or aluminum) orders of magnitude more serious? The causes of autism are not simple. This is not a story that lends itself easily to "soundbytes". There are, at the best guess of the MIND institute in California, 20-30 genes involved, but the condition is not strictly genetic.
Biomedical experts are quite certain that mercury, lead and viruses are factors for many of the kids. They believe we are looking at multiple "autisms", each of which is characterized by a different group of risk factors and causes. There are many physical symptoms that indicate toxicity in these kids. There is no such thing as a genetic epidemic, and autism is at epidemic proportions.
The experts who believe that mercury is a major factor have a lot of studies and data on their side. The media tends not to report on this. I challenge you to really do your own investigation and to write a truly unbiased, balanced report that covers this side of the issue in a credible and fair manner.
If 1 out of every 150 kids suddenly died from a mystery illness, it would be on the front page, and billions would be spent to find a cure. Autism is kidnapping the futures of thousands of kids and their families, a devastating situation. The kids can't ask for help. The families are screaming for medical help for their children, not just more therapy. Please make sure to state the urgency of this situation in your reporting.
"Thimerosal in vaccines is the main cause for autism."
Or secondary or tertiary....
How about, "thimerosal in vaccines is at all a significant factor in the cause of autism".
SF Bay Area
I feel one of the myths that is out there is that people have tried to pinpoint only ONE cause of autism and that's where it can be confusing.
Having studied the disorder for 8 yrs, it's clear to me and to many others that there are many influences that can overload and shock the immune system of a young tiny person including environmental toxins, antibiotic abuse, allergens, some of the dangerous additives in vaccines/drugs, and nutritional deficiencies.
When a small body with an immature immune system tries to tackle too many of these factors in a short time, it can have devastating consequences and effects on the development of a child, especially the brain.
Do a lot of research and keep learning. It has been very encouraging to read about many doctors, parents, and organizations that are putting the pieces together and have made strides in understanding the disorder.
For parents who fear vaccinating their kids, it's understandable. My advice is to video tape your child playing and interacting during the week before the vaccines and then if you need to reference it or prove their abilities have diminished afterward, you have more concrete evidence to support your thoughts. Doing this may also help give you the added confidence to finish the vaccination schedule but please whatever you decide as a parent, do not give multiple shots at once, spread them apart, one at a time. Observe the child's reaction for weeks after each shot and give the child's immune response time to work in between shots.
From my experience, a lot of pediatricians do not have enough current information about autism and still have the misconception that: (1) Children with ASD are not affectionate -- some are and some are not; (2) ASD can not be diagnosed before a child is 3-years old -- my son was showing signs of ASD before he turned 12 months and had all of the symptoms of ASD by the time he was 16 months old -- I shudder to think of where we would be now if we had held off on treatment until he was 3!!! and (3) That children with ASD do not want to be social -- all people are different including children with ASD -- overgeneralizations and judgments like this hinder, not help people on the spectrum.
Autism can be a terrible blow to the children, parents, and extended families. My heart aches for all who experience it. That said. I also think, as a Nurse, it is over diagnosed.
One child I know, was an outgoing, happy, perhaps over-active, maybe only very active, 4 year old. He met most milestone on time. One difficulty, once he started pre-school was impulsiveness. While at 4, that is common, and with direction and discipline, these little once become more socialized. However, socialization begins early. When the pre-school teacher reported some problems with impulsiveness, like running to the back of the room when he was suppose to be "lining up." Or wanting to sit at the very edge of the "story-time" carpet, instead of in a circle, with the other children, the parents became unduly alarmed. Off he went to specialists, I had suggested just to ask him why he did not want to sit with the children. Perhaps he felt crowded. (We can all use some body space.) Or to work with standing in line at the bank, and explaining why, we wait patiently, sometimes. (I was family, and like prophets, had no honor in my own land.) Anyway, he ended up being diagnosed with Autism. Now he is in a special pre-school, he is indeed withdrawn, non-communicative, and given to outbursts. The parent, teachers, and drs. see this change as his normal progression.
I can not help but see it, as being in a stressful, and unnecessary position. He was meeting his goals at preschool, and had met all his normal milestones prior to that. He was behaving like any 4 year old, I ever have known. Now, he is being made, to become Autistic.
It is kind of fashionable, and almost a badge of honor, when every bad behavior can now be explained away with, "You see, he is autistic." Rather than dealing with the needs of the child for proper guidance.
I am sure he is one of hundreds, and while, we must meet the needs of our special children, we should not try to make every child into one.
One myth that I struggle with on behalf of my severely affected son is that those that are on the more high functioning end of the spectrum assert that they know what life is like for my son.
I really believe that my son suffers from a different disorder than those who blog and do interviews and insist that they are offended by the possibility of a cure.
My son has a communication system that is completely paralyzed. He deserves our best efforts in helping him connect to the world around him.
Dr.Gupta, Terri is mostly wrong.
1. Autism has a genetic base.
2. Recovery does not equal cure. The person remains on the Autistic Spectrum for life.
5. Thiomersal has indeed been removed from all vaccines - except apparently the flu vaccine although a thiomersal free one is available.
Her other two points are right. The education system is off base and needs to be vastly improved to provide more one on one education for those on the Spectrum.
I also want to point out that it's a myth that EVERYONE on the Spectrum can't live independently. Given the right guidance and so forth, everyone on the upper end of it (HFA, Aspergers etc) can do so. It's only the LFA's that are going to have trouble and need constant support.
I don't know if you are willing to take contributions and experiences from outside the United States, but if you are - Australia can help!
One of the myths I'd like to see dispelled is that autism is rare. My nephew was diagnosed with Asperger's syndrome--in the spectrum of autism, if not autism itself. Well, turns out I have many of the symptoms too, explaining my tortuous relations with people some, as does his mother, my sister. And my mother, who didn't speak till she was five, and even my father. We all shared so many aspects of this puzzle, have or had normal ro genius IQ's, but were sidelined by the social aspects of this disorder. Perhaps if schools screened for all social misfits, my life would be a little different today, but I spent my years in school being bullied and even beaten (by my peers) on a daily basis. I was a straight A student. If only they had taught me how to feel human, too, I could have done something with it. And not only that, I cringe when thinking about a few other "odd" students who were "just like me"...but bullied beyond belief due to what might have been undiagnosed autism.
PS. I wonder why it is that Asperger's and autism students today can get special treatment for getting through school, but you can't get disability or educational help for it if you're diagnosed as an adult? Why is that, A. Chris Gajalin? Because I have an IQ of 130, but can't get thru college without help. Now I work PT making minimum wage. What a waste.
Here's some myths that should be addressed:
1. Autistics want to be cured/should be cured.
I do not want to be cured, nor do very many of the autistics I have met at wrongplanet.net, an online community for those of us on the autistic spectrum. You can cure a disease; you can't cure a way of being.
2. Austism is related to immune system problems.
I have a strong immune system.
3. Autistics can never be successful in school or in life.
I am valedictorian at my high school, and have several very appealing options for college. Not to brag, but I feel that I have done reasonably well in life thus far.
4. Those of us with "high-functioning" autism or Asperger's Syndrome are not the same as "profound" autistics and should not speak for them.
Well, we're closer to them than is the regular person, and non-autistics speak for them all the time. We can at least add some balance and perspective to the discussion.
And before anyone jumps on me for not truly understanding the struggles of "severe" autism: I was delayed in both speech and walking (to this day, I have odd diction and a clumsy gait, and I still have never learned to run- I'm too uncoordinated), I was not potty-trained until well after the typical child would be, and I was very nearly sent to a special ed school rather than the regular schools.
5. Only high-functioning autistics are opposed to a cure, low-functioning are autistics are miserable and should be cured.
There are a number of LFA bloggers out there who oppose a cure; the only one whose name I can recall at the moment is Amanda Baggs. There is also Temple Grandin, a university professor, and a few others can be found if you feel inclined to look for them.
6. Autism is an epidemic.
I am unaware of any good epidemiological studies on autism, and the diagnostic criteria keep changing, so it is impossible to know what the rate of autism used to be. We also don't even know very realiably what the rate of autism is today. On a side note, calling me an epidemic rather offends me. I do not consider myself to be defective or diseased.
Instead of myths, I think it's important that we focus on what's real: that people with autism are normal. They’re not the future in the sense that they have extra-human capabilities, nor are they beings from another planet, nor are they magical. They are people.
I would guess that most people with autism simply want to be happy and successful. As someone diagnosed Asperger's (and, no, not a psychologist), I can attest to that fact.
Moderator- there is no box to check marked "other"- my name is Sierra Abskey, and I am in Portland, OR.
The myths that do the most harm are those held by doctors and other experts who are trusted to know the basics of disorders such as autism, and whose advice can determine what treatments a child gets. It is extremely difficult as a parent of a child on the autism spectrum to find a doctor who is able to help their child in any meaningful way. Very few doctors or other experts know the first thing about autism, let alone the latest cutting edge research. What they don’t know hurts our kids. When it was clear that my son would get no help for his biomedical issues from any health care provider, I became one of the thousands of parents who has had no choice but to take matters into our own hands and treat our children ourselves. Many of these kids are recovering, including mine. I have been shocked by how much good quality research, published in esteemed peer-reviewed journals, is out there and is being added to everyday regarding the biomedical issues that underly the spectrum, including food sensitivities and the GF/CF diet, vitamin therapy and supplementation, immune system support, removal of toxic metals, treatment for fungal, bacterial or viral infections, even mitochondrial dysfunction, which is pretty common in our kids. The gap between the practice of conventional medicine and medical science is staggering when it comes to treating autism. For an introduction to the biomedical side of ASDs, I highly recommend the book “Changing the Course of Autism” by Bryan Jepson, MD. Parents should not be abandoned by the medical profession to do this ourselves, but it speaks volumes that we parents, considered too dumb and prone to panic to be given honest information about vaccines, are accomplishing so much with our kids that conventional medicine can’t.
It is a myth that children who recover didn’t have “real” autism, it is a myth that children can’t fully recover, and it is most certainly a myth that we “just don’t know enough” to help the majority of children with ASD to significantly improve their quality of life whether or not they recover.
I am 22 years old and was diagnosed with Auspergers at birth I believe which is on the high functioning end of the autism spectrum. I am starting paramedic school this summer. My opinion is that I know that I have this disorder and I realize that I am not the only one with it. However there is one downside to having this disorder. Whenever I am seen in the ER they never seem to take me seriously. They always act like I am faking it. Is there a way to get the doctors to stop thinking that you are faking it when you are not? It would be nice to be treated just like any other patient. Also what does cause autism? Is it a vaccine that I received as a child or is it Genetic? I also was diagnosed in the summer of 2006 with Familial adenomedas Polyposis. Is there any link between the auspergers and the fap? I hope to eventually live on my own.
The myths I dislike most:
All people with Autism are mentally retarded.
Standard IQ tests actually measure intelligence (Autistic kids, even verbal ones, should have nonverbal IQ testing!).
Autistic kids are non-social and like it that way.
That'd be a START!
My 2 1/2 year old is on the spectrum. Many experts don't believe immunizations are what directly cause Autism, they are just suspected to be a major contributor in the long list of crap we pump into our kids bodies everyday. But like one other poster said, these shots are not one size fits all, and we should be wary. We used the GFCF diet and we started getting some improvements, but the real changes have come as a result of his prescribed treatments from his Defeat Autism Now (DAN) doctor. These are things like anti-fungals and a rigorus regement of supplements. But, in the last month, he has dramatically improved. He's doing great in his ABA therapy, using words that we didn't know that he knew, and he is no longer completely trapped in the "fog" that these kids experience. We have a long way to go, but hope is in sight now. And pediatricians call DAN doctors Quacks.
My 17 year old brother has severe autism and recently moved to a residential school after living at home and attending day school his whole life. I feel as though much of the coverage of autism is about people on the higher end of the spectrum with mild, if intrusive, behaviors (e.g. stimming, flapping, etc.). To my family, however, such behaviors would be a blessing in comparison to the destruction my brother wrought on himself, my parents, and our home. We ended up with padded walls, plexiglass windows, and both my parents in the hospital for cracked ribs inflicted by my brother. This part of the spectrum is not glamorous or even really discussed, but it's a way of life for many families.
A look at how psychiatric drugs for schizophrenia, seizures, bipolar disorder, etc. are used to treat these sorts of symptoms of autism would also be appropriate and timely. Although there is no "autism drug," many psychiatrist use these sorts of medications to try to treat some of the more severe behaviors.
I would also like to see more coverage of how siblings are affected by having brothers and sisters with autism. I know a disproportionate amount of us end up working for special needs folks somehow. Also, ideas for what siblings can do when they become the legal guardians of their siblings (if the siblings cannot live without help) would be appropriate.
Finally, some of the people here have made hurtful and self-centered comments to other families that are in the same boat they are and trying their best to muddle through this situation. I hope we can all take a time out, realize we're doing the best we can for people we love, and stop some of the vitriol against ideas or methods that you may not agree with, but may be working for other people.
Does autism touch my life. It's a rhetorical question. I ponder those words, as if some magical aura named autism surrounded us like toxic smog. Autism is rather tangible. You can touch it, feel it, definitely hear it, sometimes smell it, and for the ordained mass of us, see it.
Dr. Gupta, you are a smart man, because you are asking questions. We, the families of autism are pioneers crusading through the mystery, asking, sometimes pleading for answers. Hopefully, research will define the face of autism, as the myth remains far from the fact.
I will tell you that our son who is 20, is one of quadruplets. They were all inoculated. He is the only child affected with autism. Is it vaccines or genetics?
I will tell you that he does have some savant abilities. He is a natural GPS navigation system. He can tell you every academy award winner since 1929.
I will tell you that he is a friendly soul, an oxymoron in the myth of autism.
I will tell you that he is highly motivated, a remarkable tool for implementing growth, yet another contradiction to the autism mystique.
I will tell you that his journey evolved from chewing on glass to caring for his own personal needs.
I will tell you that he is still autistic.
Sadly, for every blessing we have personally found in autism, we have witnessed the antithesis in other children affected by the same disorder. Our son's strides comprise another child's defeat; hence, the enigma of autism.
Will our son ultimately live on his own? That is a loaded question. Perhaps it is more about how the world will look at autism. How will agencies offer job opportunities? How will society embrace people with differences? The questions prevail. We are desperate for answers.
It is unbelievable that there are so many people who still believe this bogus claim that vaccines cause autism. It is scary that many of you have autistic children.
It is not the pediatrician's fault that your child has autism. Vaccines do not cause autism. Thimerosal does not cause autism. This has been proven time and time again by six scientific studies in a row! For anyone to believe that vaccines cause autism at this stage suggests an irresponsible willingness to ignore scientific evidence.
The pseudo-scientists who made claims that vaccines cause autism years ago have been thoroughly discredited.
A better use of time would be to find the best treatment for your child and stop putting the blame on someone or something else. Once there is science to back up a particular claim (e.g. a properly-conducted scientific study), then we can focus on that problem.
I am a 12 year old with autism. I feel strongly that autism for me is not a disability. It is an effect - it has impact on my life, it has consequences in my life, but it is NOT my life.
I really resent the autism "puzzle piece" logo. I am not someone with a piece missing. I am not lacking.
My blog is about life as a gifted and talented person who happens to have autism. I am defining success for myself.
I would like for you to discuss why most insurance carriers will not pay for such treatments for autism, ie, chelation. Also what if any does race play in autism. Most people I see are white middle class. I have never seen any percentages on Autism in regards to race of parents and/or child. Another question I have is the effect of Rhogam given to the birth mother on autism, has any studies been done on this? What about private pediatricians versus health departments giving vaccines, single dose vaccines as opposed to multidose?
As a developmental pediatrician and sister of a 27-year-old man with autism, I can easily dispell many of the myths that you address.
1. Every autistic person has savant abilities: True savants are incredibly rare. However, individuals with autism have a cognitive strength in visual-spatial tasks. Many of them gravitate to activities that utilize their non-verbal abilities. Many of my patients are excellent at manipulating blocks and puzzles. My brother won several art contests when he was younger.
2. Thimerosal in vaccines is the main cause for autism: I remember thimerosal being removed when I was a resident in 1999 as a preservative for vaccines. Also, the medical literature does not support the notion that vaccines, mercury, or other unusual entities are potential causes for autism. Truthfully, there is wonderful research currently under way to determine the real cause, whether it is genetic, immunologic, etc.
3. Autistic adults will never be able to live on their own: Those of us in the field refer to autism as a spectrum disorder--there are a group of individuals diagnosed with autism who require assistance in adulthood. However, there are many individuals who fall into the "high functioning" category and are very independent, successful adults.
Autism obviously touches my life daily. It is very inspiring to watch these children learn wonderful skills, such as language, reading, and swimming along with their families. It is a very difficult journey for families of autistic children. When the correct paths/detours are followed, the destination is actually quite rewarding. I am very proud of my brother, who has overcome much difficulty in his own life.
My nefew is autistic,he is 13y.old,started high school last Sep.,things are going up and down for him depending on what's going on in his life wich means in his parents life(divorced,he was 2y).
Autism is a relationship problem and all is about emotions!!
"Do you know why a child REFUSES to have eyes contact?"(comment from a English man out of his autism(BBC,he wrote a book)),and I totally agree,
an autistic person has empathy for people he is in confidence with.For example my nefew couldn't bear my sister's problems.
I am a French pediatrician and I had in my practice two autistic children.There is something that I question myself:in both cases,the mothers were "kind of depressed"or facing problems.Could this affected those kids.What for sure,those before to "developp"autism,they had problem with sleeping at night(sign of "depression").
That parents of autistic children are somehow too embarrassed / ashamed / fearful of what others may think to bring their children out in public. We aren't. Often, we keep our kids close to the vest because they have trouble with new situations. We desperately want them to be part of the outside world. The unfortunate reality is that, although we can push them, they will let the world in at their own pace.
Autism is not something you catch like a cold or the flu. It is a neurological disorder that a person is born with. That is not to say that some people may be more predisposed to developing autistic like tendencies due to an underlying disorder like what happened in the Poling case but to say that vaccines are the only cause, is to lose sight of the bigger issue. Autism is out there and it affects every ounce of our lives on a daily basis.
I have an 11 year old daughter with Asperger Syndrome. She is bright, articulate, and eccentric. She has absolutely no concept of social norms, social cues or things like sarcasm, humor or jokes. She is sensitive to loud noises and gets upset at the slightest change in her routine...But, you learn to cope and you learn the ways to help her cope...
There needs to be more education of the public about Autism and Asperger Syndrome. People who don't know my child won't immediately notice anything wrong with her. Her disability is not evident until you spend a quality amount of time with her.
These children can learn, they can go to school,many can have a job, relationships and many can even live independently. They just need support which will come with more awareness.
The major "myth" is that autism is a single "disorder" (trying to think of a good word to use while acknowledging families that don't think of their family member or themselves as having a disorder or disease...maybe state?). Autism is not like strep throat where it is one thing that is caused specifically by one causative agent and is addressed by one specific treatment. What we call autism is a clinical diagnosis based on a defined collection of symptoms and can be the result of a number of different contributing factors. When physicians suspect the diagnosis, they can test for some of the relatively more common causes, like Fragile X, but often there is no single specific cause identified.
That ties in to myth #2, the disproven theory that thimerosal in vaccines is the main cause for autism, or even a cause at all. Outside of what is increasingly being shown to be a rabid and hostile fringe of antivaccine groups, the scientific evidence has not demonstrated a causative relationship between thimerosal-containing vaccines and the development of autistic spectrum disorders. Unfortunately the popular media has seized on the claims of this fringe and by their reporting have given these claims greater legitimacy in the public eye, leaving parents more confused.
The third myth is that the typical medical professional doesn't care or know about autism, as far as how to diagnose or manage it. The problem is that in many areas of the country, there is a lack of access to subspecialists, therapists and support services, and often local governments and school systems lack the infrastructure to accomodate the needs of families with members who are autistic. The autistic spectrum is very broad, with people ranging from extremely "high-functioning" or practically undiagnosable to extremely low-functioning. The goals of management are to ensure that people in the autistic spectrum have adequate skills of daily living, that their families have support in caring for them, and that ideally people who are in the autistic spectrum will be able to live on their own and care for themselves.
Please mention the 2001 report, "Educating Young Children with Autism" and the science behind early, intensive behavioral therapy intervention such as Applied Behavioral Analysis, Discrete Trail Training. This is the best known treatment with the most scientific research supporting it's effectiveness. Sadly, insurance companies do not cover the cost leaving families to pay for thousands and thousands for medically needed treatment and burdening the local school systems. The public may not realize that Autism is a neurological condition, and due to the plasticity of the brain, is treatable, much like therapy that is provided for recovering stroke victims. With proper treatment, great strides in many of the noted deficiences in communication, social skills and cognitive ability can be greatly improved and lead to a much greater quality of life for the affected individual and their family. Many states have recognized this and have passed legislation requiring insurance companies to provide this needed therapy. It is estimated that effective early behavioral intervention can save an average of $2 million that overwise would be spent on individual care.
You can't tell how someone will develop based on what they can and can't do at age 2, or age 5. It is highly important, of course, to prepare for the future in case a child will need full-time care as an adult. It is important that every effort is made so that people can live in their own apartments with people to assist them in daily living activities such as cooking and toileting, or whatever the needs are of the individual. It is not a matter of "recover or institutionalize", though, unfortunately, many parents are given this grim outlook, and understandably, they respond by worrying about their child's future and doing everything in their power to try to cure their child.
It is a myth that because an autistic person can do skill X, that they automatically should be able to do Y. Also, if an autistic person CAN'T do skill X, it should not be presumed that they can't do skill Y.
I was dx'd Asperger Syndrome at age 10. Often when the people of special services at my school describe me, they say, "she's bright, but lacks social skills". Even though my speech frequently breaks down, even more frequently I have trouble understanding spoken language (auditory processing issues never acknowledged or addressed), it takes me an extremely long time to initiate actions such as getting a book from my bag, and making a microwave meal is a complicated process that may take well over an hour, the only trouble they find is with socializing.
Even though I have often written to them explaining these difficulties, and pointing out that ever since I transferred to this high school where people are more accepting of differences I made friends almost immediately and we are in regular contact, it is the same story repeated. Because I have high scores on IQ and other tests, my needs are often completely ignored, or downplayed to a ridiculous degree.
Similar things happen with autistics considered low-functioning, except that instead of needs being ignored, it is more likely that abilities and potential are ignored. It is much like when Deaf people were presumed to be mentally retarded. Of course there are autistics who would score as mentally retarded on tests, and they are no less deserving of acceptance and whatever supports they need. Very often, though, autistics have skills that are overlooked.
It is a myth that someone who can speak at least some of the time is being defiant when they can't speak. I have often throughout school been yelled at by staff for not hearing my name (it didn't stand out against the rest of the noise of the environment), for not responding quickly enough (when I was still trying to process what they said, so that I could turn jumbled sounds into words, and then into meaning), for rocking and spinning (which help me to regulate sensory information, and which I may do when anxious, calm, or any other emotional state). This is not misbehaving. This is not being withdrawn. This is called interacting with the world. Others need some more understanding and patience, so they can recognize things for what they are.
An autistic person can stop/decrease self-injury, can start to talk, and respond to their name more often and be just as autistic.
Identifying someone as "an autistic person" rather than "a person with autism" does not define the person by the condition, anymore than calling myself "a gay person" defines me entirely by my sexuality. Being autistic is only one part of me, of course, but it's still an integral part of me. And yes, I do consider myself disabled. That's not an ugly label to me, though. Sure, my needs are not as great as some, just as there are plenty whose needs are fewer than mine. But I don't think of disability as something to be ashamed of, nor do I feel that I need some savant-type skill to "compensate" for it. This is who I am, and I believe it is an equally valid configuration. That doesn't mean I oppose things like speech and occupational therapies. Though instead of thinking of them as therapies, I think of it as education, to help people navigate a world that didn't take our existence into consideration. Hopefully, through advocacy, that will change.
I would like to see a feature on Autism that comes from a point of view that starts with "what if"
What if there is not a lack of communication, instead there is just a different form of it that we haven't yet figured out?
What if the stereotypical repetitive behaviors are just behaviors that are exaggerated in comparison to "neurotypicals"?
What if we assumed that each individual with autism could achieve just as much in life as each "neurotypical" individual and treated them as though their potential was as unlimited as we consider "neurotypicals"
What if we did not make assumptions that people on the spectrum have no ability to be social or have strong relationships, or to have empathy?
What if we did not accept people whispering the word autism as if it were a "problem"
What if parents had so much support that they felt just as strong as parents of neurotypical children in providing their kids with all they need to be healthy & successful & happy?
What if every teacher was supported to take time to better understand autism spectrum disorders and strategies that can be used to help individuals on the spectrum be more successful.
What if instead of asking my son to conform to your world, you meet him part of the way - I find that being a part of his world is a blessing and a privelege every day....what if you were lucky enough to open up your mind enough to be touched by someone so beautiful.
I would like to see reports on some of the alternative treatments...such as chelation, hyperbaric chamber, antifungals, homeopathy, etc.
I've used herbal anti-fungals and anti parasite with my child with great results. We are currently doing a series of homeopathy to reverse the affects of shocks and traumas such as vaccines. I've seen some pretty amazing results so far and will continue back to his birth.
(My son is 3 yrs old and is verbal)
If the pediatricians are going to be screening for autism and ASD earlier, then they need to have a plan for TREATMENT for the parents. More than just therapy...
Also..insurance companies need to step up coverage. Even with insurance, therapy is very expensive...if you consider a $30 or $40 copay for each visit..with a limit of 25 or 30 visits per year. These kids need much more than 30 visits per year!!!
Christel King, Windham Maine
I would love see that autism is treatable, that just because you get diagnosied with low functioning ect that is not necessarially where you stay! there is a 1-10 scale with autism 1 being mentally retarded, 10 being what is called nuro typical. when my son was diagnosied he was a level 3, they told us he would never talk again, put him in an institution and pad his walls. that was HIS type of autism and to just go home and deal with that reality. he was bashing his head daily so bad that they told us he was going to give himself shaken baby syndrom..... we found a protical with biomedical and he is now mainstreamed in a regular class with no speical ed, sings, talks, plays, has 2 girlfriends (at age 6)very friendly ect. they just took away his autism label this oct. all with changing some food intake, and adding some suppliments and address some underlying medical isues. no one tells you THAT when you get a diagnosis. it's like they WANTED us beat up and giving up on our son.....not wanting him to succeed. no wonder they can't find the cause....no one wants to look at what is ALREADY working in many of these kids, and then go backwards from there. would also love to see the parent rating scale talked about from www.autism.com where it rates interventions on what helps, hurts and makes no difference to give the message of HOPE this autism month of APRIL.....
I think people are more focused on a "one size fits all" strategy when discussing Autism. Some are focused on shots, others are focused on DNA, some say "Let's cure it" others say they are fine. How about some education? ASD or the Autism Spectrum Disorder is a WIDE variety of behaviors, comprehension, and so much more. Why not educate the American people on the spectrum? Simply because one person is yelling "It's the shots," doesn't mean it works for EVERYONE on the spectrum.
If more people understood what Autism is and the different faces of Autism, we wouldn't have the stares, whispers and pointing, and rude comments that we receive when walking through the mall or the store. Everyone, including the Social Security office treats Autism like a disability, but my 2 year old son has taught me the most valuable lesson in life - unconditional love. Yes, we have our trying moments, but the Mother's day he first said the word Mommy was my second happiest day next to the day he was born. Those milestones most parents take for granted like talking, eating, potty training and the such are amplified with the accomplishments our son has. Some of them, he may never accomplish, but he tries and he tries his hardest.
Educate people on the therapies, education, and all of the agencies and people who interact with an Autistic child to understand their differences and help them be a productive member of society. My fear is that we continue to focus too much on what is causing it (not that it's not important) than trying to educate people on how to handle those who have it. It's irritating that I have to continually tell the Wal-Mart greeter not to touch my son to put on the sticker as it will send him directly into a meltdown. They don't listen because they are not educated about Autism. Short of putting a sign on my son's forehead, that's all I can do. Then they make nasty comments about controlling my son because they just "invaded his space."
I think it is VERY important to also focus on siblings. Most of the time, the Autistic child receives the bulk of the attention, simply because they inadvertantly demand it. Siblings also need to understand how to work with an Autistic sibling and work through their envy or feelings of guilt or seperation. So instead of scooping our son up and giving him a big bear hug, we ask first. It's not a major difference to us, but to Jesse, it's the world.
there are lots of sterio types and dumb things say .im an adult with hfa ,i hate when someone say oh you look normal or your so arctlic as to assume everyone with autism cant speak ,im an artist .so people will ask my parent is she savent .this is very rare you can have autism and have a talent and not be savent .i wissh they would shgow adults like me in the news who have over come alot and are out anbd doing things .we are out there to
Seems that most people here are talking about the "higher" levels of Autism which made me wonder are there any stat's that show just how many fit into the "higher" functioning, "mid" range and "lower" functioning levels of the autism spectrum? I have two nephews who are autistic, one is the Asperge's level and the other is "mildly" autistic. So we cover the High and Mid range of the spectrum BUT both have needed a lot of help especially with speech.
At this point in time (the boys are only 11 and 8) it seems as though the elder, higher level child wil be able to live an independent live but the younger Mid-range it's questionable. What will happen to all these mid-lower level children when their older? Group Homes R US??
It has been mentioned and I would like to emphasize the importance of including on the CNN Autism special:
1. The treatments available to those on the Autism spectrum.
2. The issue of insurance companies not offering coverage for treatment of PDD.
Specifically, I have seen the benefits of ABA therapy, Applied Behavioral Analysis; there are peer reviewed studies to support that it is the most effective form of treatment for Pervasive Developmental Disorders (Autism spectrum). In my experience as an ABA therapist, I have seen ABA therapy work most effectively in combination with Speech/Language therapy, Occupational therapy and Developmental preschool. Studies also show, and I have seen first hand, that the earlier the age at which treatment (ABA) begins, the greater the chances of recovery.
Thus, it is so important that insurance companies cover the cost of ABA therapists and consultants. As of now, the children who can receive the best scientifically proven type of treatment for PDD are only those of families who can afford it, and even if the insurance company agrees to reimburse the therapy, then only those families who can cover the cost up front, waiting up to 6 months to be reimbursed, can get treatment for their child.
Furthermore, it has also been shown that the more therapy the child receives, the greater the chances of recovery. The ideal amount is 40hrs/week. Even with paying a beginning ABA therapist with little if any experience, at least $13/hr equals over $2200 a Month, plus the parents also need to pay a consultant and/or program manager to design and manage the behavior program and supervise the ABA therapist. I'm not positive of their rates, but i believe it is at least $200-300 per hour. It's not fair to the children whose families cannot afford this.
An alternative (or an addition) to insurance coverage is funding to school systems to provide quality ABA professionals and paraprofessionals in the classroom.
I hope that CNN will be respeactful when covering Autism Day and will also include ASPERGER SYNDROME on the show as we never get any good coverage of our condition. Please cover OTHER SENSITIVE SUBJECTS such as the under-researched and often overlooked issues like SENSORY ISSUES and DIET (GLUTEN AND CASEIN FREE.) These issues are constantly overlooked and CNN has a wonderful chance to shine light on these issues and help so many people out. Fluorescent tubes causes people with Autism and Asperger's fatigue and lack of concentration and the new EU laws are violating our Human Rights and quality of life. Constant food mis-labelling is also hurting our guts with gluten and casein (milk protein) in many foods without warning. PLEASE HELP US and cover these issues. Thank you.
I am a sibling of a 15yo with autism. I'm a little upset about the recent surge of stories about children with autism who have been "cured". I personally do not think that the public should be led to believe that autism is a curable disorder.
I'm not doubting the wonders that intensive, early intervention therapy can do. In fact, my brother experienced a drastic reduction in symptoms after several years of therapy.
However, I think that families who claim that their children have been "cured" were probably not dealing with a severe case of autism. It's important to remember that autism is a spectrum disorder and that many kids on the severe end won't see the same benefits from therapy that higher functioning kids are likely to see.
In the end, I just want families of newly diagnosed children to have realistic expectations. The plethora of cure stories available to us is not true to life, in my opinion. Let's keep it real - show people at all points on the spectrum and provide appropriate advice for their families.
We are the parents of a 12 1/2 year old son w/autism. He was diagnosed at 3 yrs. and 5 months of age.
How do we better educate and train our current and future teachers and school staff on dealing with our autistic children?
Our son was suspended from school 3x this year. After trying a revised school schedule to no avail, homeschooling was our temporary option until some kind of residential program or dayschool program opened up in our area. The school had to submit their application to the Dept. of Education for their approval and they approved it, he has now been in a residential program here in Indiana for a month now. He has adjusted well to everything being all new, and we're grateful for that.
How can the government and insurance companies help the average American who works everyday pay for autism treatments and therapies since we're not famous people like Jenny McCarthy and Rodney and Holly Robinson-Peete, who all have the financial resources to provide their child or children who is autistic with the best of care.
We believe our son's autism was a result of three things: a) we believe it has a genetic component to it; b) we believe he suffered oxygen deprivation right after his birth as he turned blue shortly after they took him over to the Apgar table to check his stats; and c) we believe something in the environment (whether that was in utero or elsewhere) were the culprits for him.
Thank you CNN and Larry King (Our son loves Larry King) for your continued attention to this epidemic outcry for help!
I have a son who has Asperger's (high-functioning autism). I stongly believe that in my son's case, the autism is hereditary. I believe that his father is an undiagnosed autistic adult. How do you go about getting tested as an adult? He has applied for disability, but keeps getting denied. The results from the disability office say that he doesn't qualify because he can "use his hands" for work. Yet, there are not many jobs that will hire someone with emotional/social issues. Also, the education system needs more help/training on how to best care for each child on the spectrum.
-Parent & Wife of an Autistic Person
I am a mother of an autisic child as well. I was curious if CNN will also cover the occurence of "sleep problems" and "night walking" with autism. Alot of parents are using melatonin as a sleep aid. I think this is a very intresting fact to look into...
How about the myth that school systems can and should be responsible for all the eductional and therapeudic needs of an autistic child. Schools should not be the sole providers of all therapies for autistic children and INSURANCE COMPANIES SHOULD NOT BE ABLE TO EXEMPT THEMSELVES FROM COVERING THERAPIES FOR AUTISM! Families of autistic children are drowning in debt simply to provide the speech, occupational, ABA and other therapies that will help these children become more independent, even productive members of society. There are not enough hours in the school day for children to get an education, socialization AND therapies. This is a societal issue that needs to be addressed by the local, state and federal government. Several states have passed mandatory coverage for autism therapies; but we need federal legislation to help those in compannies that have interstate insurance policies.
I know you are looking at medical issues, but PLEASE include insurance coverage as part of your report
Myth: if your child makes eye contact, he/she does not have autism. Both my kids have autism and one has always made meaningful eye contact.
Myth: concommitant medical problems are not part of autism (gastrointestinal issues, for example). They seem to be for a significant and growing subset of those with autism.
The definition of autism should be explored. It covers a broad range of ability and activity and leads to so much confusion. The disorder is defined by the behaviors we see in our children, and then they are all lumped together as "pdd,nos" or "ASD" or some other category. Terms like "severe" and "mild" are ill defined as well. These terms we use are so vague they seem meaningless. And it seems that many medical professionals do not consider the possible medical/biological factors that could result in such "autistic" behaviors.
I think the political aspect of this disorder needs attention, too. many states are currently considering autism insurance legislation. This would be so helpful for so many families, but it's just a start. What about families who have no insurance or whose insurance policies fall under "ERISA"? What is being done to help them?
The doctor who just diagnosed my son with Asperger's also feels strongly that my husband has it. But he doesn't see any benefit in my husband being told about his condition. What do those who have dealt with this for a longer time feel about this? Should I tell my husband?
My son had autism from the start.
No eye contact even as an infant.
I did notice changes after shots though, typical at 18 months lost words and retreated to his own place.
He is "high functioning" I hate that term, sounds like "he's above" or "better" but its reality.
He talks, reads, has few behaviors that make the autism noticeable.
I want parents with 3 year olds to know it gets better. No one told me that...at about 6 things improve. We are far from typical but there are worse things that autism...like Leukemia, Ataxia Telangiectasia, both my other son suffers from. You and your child can survive autism.
My son is 18 - he was dx when he was 2 1/2. At this point in his life, all he wants is to have friends. We've dealt with a lot of issues and many different emotions along the way, but this one just tears my heart out. It's the saddest thing I have ever experienced in this "world of austim." He belongs to a social club - but most of the kids are on the spectrum, I've paid for friends in the past - the best ones (the only ones) are also the busiest and it can be very expensive.
Every autistic person has savant abilities in some area such as Dustin Hoffman in Rain Man. Eg: math or memorization
We have a more extreme spread of abilities, not necessarily savant abilities. Also, my biggest weaknesses are also at times my biggest strengths. Perseveration has allowed me to be successful in a career which is not considered to be autism friendly.
- Thimerosal in vaccines is the main cause for autism.
If that is true, why are many young children still being diagnosed with autism even though thimersol has been removed from the vaccines given to babies? There are many causes. More research required.
- Autistic adults will never be able to live on their own. They will always need assisted living care.
The important thing to understand is that although there are many autistic people living independently, this can be masked by other forms of supported accommodation such as marriage. Also, people need to understand that the need for supported accommodation can vary throughout the lifespan. For example, an independent person may have some difficult years when support is required or a person who required supported accommodation at 20 may be independent by 40.
Do you think that there are prevailing myths related to autism?
The prevailing myths are based on stereotypes. They are damaging eg a 12 year old boy was denied diagnosis because he was such a friendly, outgoing child. The diagnostician ignored the fact that the girls in his class who had liked him were becoming frightened and fed up with being hugged and kissed constantly. Diagnosticians need to listen and talk to autistic people as part of their professional learning.
Does autism touch your life?
That is an odd question. I do not know how something so intrinsic to who I am can "touch" my life. I am female. I am short. I am autistic.
I have a 5 year old son with ASD. One of the things that really upsets me is when people look down at him and consider him retarded. He is very high functioning and is very advanced. He has not be diagnosed with mental retardation, he just simply doesn't have it. He doesn't seem himself as being different from other kids so when he gets treated differently and spoken to like he's an idiot, how do you think that makes him feel? At some point he's going to start thinking there is something wrong with him. It is hurtful for people to look at my son with ASD and say "well my child is normal". Really... What is normal? Maybe we could look at the impact this treatment has on these kids?
My son has taught me, our family, and our friends so many things. Like most of use we rush through life never taking the time to really appreciate what we have in front of us. With an Autistic child it is simply not possible. They will make you stop and smell the flower, look at the shape of the cloud, or read the story for the 15th time. We have relearned how to appreciate how wonderful life is. Perhaps we could look at just what they can teach us?
One of the things that burns me is when people say children with ASD are not affectionate. EXCUSE ME?? My son is very affectionate. He loves to give hugs and kisses and is very cuddly. He is very touch focused. He will touch my skin, lay his head on my chest, or put his cheek to mine because it is very comforting to him. He always has to know mommy is just within arm's reach. Our house is full of hugs and lots of love. He may not say "I love you" but he does say "mommy you are my heart". It's the same thing, if not better than the three words that are so over and misused today. Perhaps we could explore how children and adults with ASD really do love?
Autism is not a disease. It is another path in life. There is hope for them. My son will be able to live on his own wihtout a problem when he comes of age. Had he never gotten services it would have been a very different story. He is currently semi-verbal, a far cry from the unintelligeable babbles he was making a year ago. He will be able to live and function alone because of the effort put forth by our family and the services he receives. However if funding keeps getting cut for Autism Research (as it was again in PA) we will lose the ability to learn more about them and ASD and eventually, like others, these children will get lost in the system. Perhaps we should review how shortchanged Autism funding is and the effect it has on the families of these children? Or how services really do help improve the lives of people with ASD?
We need to quit looking for places to lay blame. We need to focus on learning about ASD. These children (and adults) have so much to teach us and no one is paying attention. Its disgraceful and disheartening. Who cares how they got it, its a rare and wonderful learning experience. Their voices need to be heard, and those that can share it, need to for their sake.
My son is my life, my heart, and my world. I wouldn't change him for anything.
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