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Awareness of autism spectrum disorders

For a number of years now, my wife, Jen Morgan has taught children with autism and autism spectrum disorders. Throughout that time, I have had the opportunity to volunteer at various charity events to help raise awareness and understanding of these disorders. I have learned significant information about these disorders and how it has affected the families that live with them. One thing that has always bothered me was the lack of awareness of autism spectrum disorders in today's society. In the past, it was rare to find anything in print or on the evening news about autism. Recently there seems to be an influx of reports in the media about autism, its research, and the effects it is having on the families living with the disorders. Why is that? What has changed that has brought a disorder that has been around for a very long time to the attention of so many people?

What is autism? I think it is important to first explain what autism is. The Autism Speaks web site says that "Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), Aspergers Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders" (Be Informed, N.D.). According to Ehlers & Gillberg (1993), the United States government figures show that the prevalence of autism among its population has been rising every year. The reason for the increase has not been found, but improved diagnosis and environmental influence are considered to be the cause for the increased awareness. Male children have been reported to be more prone to the disorder as compared to the female children and are diagnosed with the condition quite frequently. In the United States, it is estimated that around 1% of the boys are diagnosed with the disorder (p. 1327). One in 150 children are born each year with an autism spectrum disorder (about autism, N.D.). What I found to be interesting was that autism is more widespread than childhood cancer, juvenile diabetes and pediatric AIDS combined. There does not seem to be a definitive answer as to what causes autism. Some scientist think it is environmental, genetic, or a compromised immune system during the child's pre-natal development, while some believe it is a combination of these things.

Recently animal studies have produced evidence on how the immune system of the body can influence symptoms which are linked to autism. These studies aim at increasing the level of awareness and also investigations of useful immunological facts to researchers who are not in that field and those within the field of autism at the community level (Haley, 2006). It was once believed that autism was caused by bad parenting, but in the 1970's Dr. Bernard Rimland, the father of a son with autism, and the founder of the Autism Society of America, assisted in the research that concluded it is not caused by bad parenting but rather is a biological disorder (Be Informed, 2009).

Awareness has always been one of the biggest battles for the autism community. Bob Wright, former CEO of NBC Universal, found out in 2004 that his grandson Evan was diagnosed with autism. Being the CEO of a major entertainment company like NBC, Wright had enormous power to push a topic such as autism onto a vast audience. In February 2005, Wright and his wife Suzanne co-founded Autism Speaks. Autism Speaks is an organization that researches autism, its causes, and possible cures. As well, they advocate for families with autism and spread awareness about autism and autism spectrum disorders. They have established a network of research scientists and families who are an unparalleled source of information that can dramatically increase our knowledge and understanding of autism spectrum disorders (Wright, 2009). The Wrights have had a huge impact on the autism community by spreading awareness of the spectrum disorders around the world. I was able to find more than 50 different news stories, special reports and interviews which the Wrights personally did between the years 2005 and 2007, with the might of NBC Universal behind them. Not surprising they were almost all on NBC and NBC affiliate stations. When autism effects the famous and wealthy, they have the means and the audience to advocate for autism spectrum disorders, where the everyday common person does not. It is obvious that the Wrights role in the autism community has brought significant awareness to the country and world.

While the Wrights work in the autism community has yielded positive awareness, the question arose, what are the unconstructive aspects of autism awareness, and who specifically could be contributing to this form of awareness. When I was searching for negatives in regards to autism awareness, the person that kept coming to light was actress Jenny McCarthy. McCarthy's son was diagnosed with autism in 2005 at the age of 3. She became an activist to raise awareness of autism together with her boyfriend, actor and comedian Jim Carey. McCarthy claimed her son became autistic after he received his measles, mumps, rubella (MMR) vaccine. Debate occurred when she announced that she had cured her son's autism with a technique called chelation therapy. Basically, chelation therapy is the natural cleansing of the body of mercury which is in vaccines and that she and others believe can cause autism, although there has been no solid scientific evidence to prove this. This theory has been widely rejected by the National Institute of Mental Health, concluding that "autistic children are unlikely to receive any benefit to balance the risks of cognitive and emotional problems posed by the chelating agents used in the treatment" (McCarthy, 2005).

It is believed that the symptoms that her son initially had and what led to his diagnosis was actually a disorder called Landau-Kleffner syndrome. It is a neurological disorder that has some of the same symptoms as autism, and is often misdiagnosed as autism. Symptoms generally disappear as children get older (Landau, 2005). Although her work at raising awareness for the autism community is in its basic form positive, some see it as drawing negative attention to a very controversial and sensitive subject. The possibility of her son's misdiagnosis coincides with a recent study published in the Journal Pediatric, and reported on by the New York Times. The survey covered 78,000 households, which had diagnosed family members with autism. In the article Carey (2009) stated that nearly 40 percent of the children surveyed no longer fell into the category of what would be considered an autism spectrum disorder. This supports what was addressed about McCarthy's son, and about children being rushed into a diagnosis that could be inaccurate. Their symptoms labeled autism could very well have been a disorder like Landau-Kleffner syndrome, which in most cases is grown out of, not cured.

I had an interesting conversation with my wife, who has been a teacher of children with autism and mental disorders for over 10 years. We were talking about parents that she had dealt with in the past that seemed to use their children's disorder to get attention for them and seem to exploit it for monetary gain. (J. Morgan, personal communication, December 09, 2009) said "it is a disorder in itself. It's called Munchhausen by proxy. People with this disorder want their children to be sick, or to have a disorder. They feel satisfied by getting attention from others, and very upset if they don't." This is not to say they don't love their kids, but the disorder makes them seek attention. Morgan mentioned one mother that would act almost disgusted or taken a back if they met someone who had never heard of them or their child. Now they were not people of importance in the community, but they were known for showcasing their daughter at various autism awareness events.

Munchhausen by proxy fits in with McCarthy and her son. McCarthy seemed to use her son's disorders to gain attention to write books and boost her failing career. Now this is only my opinion but it falls into line with my research. It is obvious McCarthy loves her son very much and wants nothing but the best for him, but to say she cured her son of autism is a little outlandish, and she provides no scientific data to back up her claims. The data does support the fact that a lot of children are misdiagnosed with autism, and that it is lead poisoning or exposure to some other chemical which is causing their neurological disorders.

Awareness within the autism community in any fashion is a good thing. The increase in the number of individuals reported with autistic spectrum disorders can be attributed to changes in referral patterns, in the methods of diagnosis, and the knowledge of the different manifestations of autism. Bringing a topic like autism to light and the education of the general population only serves to help the autism community. By researching and advocating for those living with autism spectrum disorders, it will only be a matter of time before the cause and ultimately a cure is found. Ownby (2009) said that "The more we publish research and statistics we only help people become more aware of autism spectrum disorders and diagnoses."

One thing I did learn was that families that have children with autism are very brave people. They deal with real miracles every day, and live with the hope that one day all their hard work and the work of so many others will bring the child that they know and love out to the rest of the world. Sell (2007) said "Growing up is hard work and the world can be a confusing place, especially for someone with a processing disorder. While I can't change the world for my son, I can give him the tools he needs to puzzle things out for himself. And that gives me hope." (p. 237)

As I was researching autism, I found that the lengths that some will go through to raise awareness of the disorder can be as different as night and day. From people like the Wrights, and McCarthy, to parents suffering from their own disorder like Munchhausen by proxy. It's clear that they all have, in their own special way, a very big heart and want nothing but the best for family's dealing with these disorders. I still want to know why it takes someone of stature like the Wrights or McCarthy to open the world's eyes to a disorder that is affecting so many families every day. Why is it that only the rich and famous have the power and influence to effect change in regards to a topic such as autism? Is it the resources that are available to them, or is it the simple fact that they have such a powerful influence over so many people?

References

Research Log

Why, in recent years has there been an increase in awareness of autism spectrum disorders?

12/5/2009

For a number of years now, my wife has taught children with autism and autism spectrum disorders. Throughout that time I have had the opportunity to volunteer at various charity events to help raise awareness and understanding of these disorders. During this time I have learned allot about these disorders and how it has affected the family's that live with them. One thing that has always bothered me was the lack of awareness in today's society, until the past couple of years. In the past it was rare to find anything in print or on the evening news about autism. But recently there seems to be an influx of reports in the media about autism, its research, and the effects it is having on the family's living with the disorders. Why is that? What has changed that has brought a disorder that has been around for a very long time to the attention of so many people? In the flowing paper I will try to answer some of these questions, and try to get a better understanding as to why there has been an increase in awareness and understanding of an issue that has affected so many lives for so long.

12/6/2009

About autism. (n.d.). Retrieved November 27, 2009, from the Autism Society of America Web site: http://www.autism-socety.org/site/pageserver?pagename=about_home

The basic facts about autism spectrum disorders in web site format.

This is a basic article explaining what autism is, and the basic facts about the autism disorder. Most of the information is basic and could only be used as unverifiable facts. Further research would be needed.

12/6/2009

Be Informed. (n.d.). Retrieved December 06, 2009, from the Autism Speaks Web site: http://www.autismspeaks.org/whatisit/index.php

The basic facts about autism spectrum disorders in web site format.

Ehlers, S., & Gillberg, C. (1993). The epidemiology of Asperger syndrome: a total population Study, Journal of Child Psychology and Psychiatry, 34 (8), 1327..

This is a journal entry speaking to the prevalence of autism disorder in the United States and to the increase in awareness of autism throughout the country

12/7/2009

Commonality. 1 in 150 children are born each year with an autism spectrum disorder. What I found that was interesting, and mildly disturbing was that it is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. This is a very important fact that I think needs to put in my final draft. Remember don't go overboard on all the basic facts. Stick to your topic.

12/7/2009

I thought I would talk to my wife to help me decide where to start my research. She is a very talented teacher of children with autism, and has been very active the community for years. She suggested I look at famous people and celebrities bringing attention about the autism disorders

12/8/2009

Bob Wright. (2009, October 20). In Wikipedia, The Free Encyclopedia. Retrieved December 06, 2009, from http://en.wikipedia.org/w/index.php?title=Bob_Wright&oldid=320932311

Bob Wright, former CEO of NBC Universal. 1986-2007 for 21 years My wife said I should do some checking on bob Wright. His grandson Evan was diagnosed with autism in 2004. Being the CEO of a major entertainment company like NBC He has enormous power to push a topic such as autism onto an enormous audience. This Wiki entry is some basic information about bob Wright and would be good for basic back ground information only. His impact on the autism community will require further research.

12/8/2009

While doing searches around the internet I was able to find more information on bob Wright and his impact on autism. His grandson was diagnosed with autism in 2004. In February 2005 Wright and his wife Suzanne co founded Autism speaks, an organization that researches autism, its causes and possible cures. As well they advocate for families with autism and spread awareness about autism and autism spectrum disorders. They have established a network of research scientists and families, an unprecedented source of information that will dramatically increase our knowledge and understanding of autism spectrum disorders. He has had enormous impact on the autism community and getting awareness of the disorders out to the world. With the might of NBC universal behind him, between the years 2005-and 2007 I was able to find more than 50 different news stories, article, special reports and interview bob Wright and his wife Suzanne personally did. Not surprising they were all on NBC and NBC affiliate stations. This will make a great source to make the point that the when autism effects the famous and wealthy they have the means and the audience to get there word across, where as the everyday common man does not. I need to see if there are any negative aspects of the wrights or others work. Is there work causing any controversy within the autism community. This brings up a good question of whether or not the over exposure of an issue like autism is good or bad.

12/8/2009

I have seen allot about Jenny McCarthy and her supposed sure for her sons autism, need to get a little more into this.

Jenny McCarthy. (2009, December 14). In Wikipedia, The Free Encyclopedia. Retrieved December 08, 2009, from http://en.wikipedia.org/w/index.php?title=Jenny_McCarthy&oldid=331525867

Landau-Kleffner syndrome. (2009, November 14). In Wikipedia, The Free Encyclopedia. Retrieved December 15, 2009, from http://en.wikipedia.org/w/index.php?title=Landau%E2%80%93Kleffner_syndrome&oldid=325795007

This is a wiki entry explain the landau-Kleffner disorder often misdiagnosed as autism. Connect directly with Jenny McCarthy. It is believed that is what her son actually had and not autism.

Jenny McCarthy's son was diagnosed with autism in 2005 at the age of 3. She became an activist to raise the awareness of autism together with her boyfriend, funny man Jim Carey. McCarthy claimed her son became autistic after he received his measles, mumps rubella (MMR) vaccine. Controversy occurred when she came out and said she had cured her son's autism with a technique called chelation therapy. Basically, it is the cleansing of the body of mercury which is in vaccines and that she believed it causes autism. This theory has been widely rejected by the National Institute of Mental health, concluding that "autistic children are unlikely to receive any benefit to balance the risks of cognitive and emotional problems posed by the chelating agents used in the treatment" (wiki). It is believed that the symptoms that her son initially had and what led to his diagnosis was actually a disorder called Landau-Kleffner syndrome. It is a neurological disorder that has some of the same symptoms as autism, and is often misdiagnosed as autism. Symptoms generally disappear as children get older. This could lead to McCarthy's belief that she cured her son of autism with chelation therapy. The question I have now is was her son misdiagnosed and did she know that, but was so committed to the autism argument and that MMR vaccines caused it that she had to stick to her argument? Or, did she really cure her son's autism.

So, did McCarthy continue her crusade to keep her name in the media or was she really committed to the autism cause?

12/9/2009

Carey, B. (2009, October 5). Childhood: Autism diagnoses rising, U.S. reports. The New York Times. p. C2

This is an article examining a recent study published in the Journal Pediatric concerning a phone survey conducted. The survey covered 78,000 households, which had diagnosed family members with autism. The article is a good source of data concerning how people have been diagnosed with autism and autism spectrum disorders. Additionally, it can be used to discuss the possibility of people being misdiagnosed with autism spectrum disorders.

The article stated that nearly 40 percent of the children surveyed no longer had fell into the category of what would be considered an autism spectrum disorder. This supports what was addressed earlier about children being rushed into a diagnosis that could be inaccurate, and the symptoms that could have been labeled autism could very well have been something that is grown out of.

12/9/2009

Pegram, C. (2008). Out of a distant world. Retrieved November 27, 2009, from the Autism Treatment Center of America Web site: http://www.autismtreatmentcenter.org/contents/reviews_and_articles /distant_world.php

This article is a basic overview of the autism disorder with basic facts. Additionally, it contains quotes from people living with autism disorders. This a good article for basic unverifiable information, and personal accounts. Further research would be needed to verify some of the information.

12/9/2009

McLaughlin, P.L., & Wehman, P. (Eds.). (1996). Mental retardation and developmental disabilities (2nd ed.). Austin, TX: Pro-ed.

This is a text book for students beginning a career in the care and teaching of people with mental disorders. Since this is a text book for college students the information would make a great source from the point of view of the academic community.

12/9/2009

I had a nice little conversation with my wife today. We were talking about parents that she had dealt with in the past that seemed to use their children's disorder to get attention for them and seem to exploit it for monetary gain. My wife said "it is a disorder in itself. It's called Munchhausen by proxy. People with this disorder in a way want their children to be sick, to have a disorder." They feel satisfied by getting attention from others, and very upset if they don't. It is actually a disorder that is being research by the autism research institute. This is not to say they didn't love their kids, but were attention hungry. She mentioned one couple that would act almost disgusted or taken aback if they met someone who had never heard of them. Now they were not anyone of importance in the community, but they were known for showcasing their daughter at various autism awareness events. I thought this went right along with jenny McCarthy and her son. She seemed used her son's disorders to gain attention for her failing career, to write books, and boost her career. Now this is only my opinion but it falls into line with my research. I am she jenny McCarthy loves her son very much, but to say she cured her son of autism is a little outlandish, and seems a little strange. Chances are he was misdiagnosed. My wife said a lot of children are misdiagnosed with autism, when in fact it is lead poisoning or exposure to some other chemical.

12/10/2009

Famous People With Autism. (n.d.). Retrieved December 10, 2009, from the Autism love to know Web site: http://autism.lovetoknow.com/Famous_People_with_Autism

This is a nice website that looks at the possibilities of famous people throughout history that may have had an autism spectrum disorder. Some notables are Albert Einstein, Virginia Woolf, and Courtney love. Courtney love was the only one that I could find that was actually diagnosed with a spectrum disorder. There is no solid evidence to show that any of the others actually had autism, they did show autism traits that would make people believe they did.

12/11/2009

Ownby, M. (2009, April). Autism Awareness and Acceptance. Retrieved from http://autismaspergerssyndrome.suite101.com/article.cfm/autism_awareness_and_acceptance

This an article states allot of basic about autism. Statistics, awareness, and myths. But is make a good point that the continued research in autism and ever changing statistics has drawn autism into the light and is a reason why there has been an increase in awareness in the past few years.

Quote (Ownby, 2009) "By publicizing this statistic, people are becoming increasingly aware of the growing prevalence of autism spectrum disorder diagnoses"

12/11/2009

I'm getting in a rut. I need to finish this up. I need to start writing and clear some of my thoughts up. I am over thinking this.

12/11/2009

Autism Statistics (n.d.). Retrieved December 11, 2009, from the EMED TV Web site: http://autism.emedtv.com/autism/autism-statistics.html

This is basic statistical information about autism

12/12/2009

Sell, C. (Ed.). (2007). A cup of comfort for parents of children with autism. Avon, MA: Adams.

This is nice book of shared stories of family's who have children with an autism spectrum disorder, some of the trials and tribulations in their everyday lives, and how they get through the tough days. This is a great source to show how the everyday family lives with a family member who has autism, and how the disorder has changed their lives.

(Sell, 2007) "Growing up is hard work, and the world can be a confusing place, especially for someone with a processing disorder. While I can't change the world for my son, I can give him the tools he needs to puzzle things out for himself. And that gives me hope".

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