techandsci.weebly.comtechandsci.weebly.com/.../3/3/9133307/final_paper.docx  · Web viewAutism Awareness. Autism Education. Autism Speaks. Organizations and the Media. California

1

2

Table of Contents

I. Introduction

II. Autism Spectrum Disorders

a. Asperger’s Syndrome

b. Childhood Disintegrative Disorder

c. Rett Syndrome

d. Pervasive Developmental Disorder – Not Otherwise Specified

The Autism Epidemic Misconception: The Effect of

Methodological Factors on Autism Prevalence Rates

Katlyn Elizabeth BainesTallwood High School

12.19.2011

3

III. Prevalence vs. Instance

IV. Prevalence Studies

a. Methods

b. Considerations

i. Autism vs. Autism Spectrum Disorder

ii. Age Group

iii. Population

V. Current United States Prevalence Estimates

a. Developed Countries Statistics

b. United States Statistics

VI. Possible Reasons for More Cases

a. Awareness

b. Diagnostics

c. Age of Diagnosis

d. Mental Retardation

VII. Autism Prevalence Factors

VIII. Diagnostic Criteria

a. Before 1940

b. 1980

c. 1994

IX. South Korea Study

X. Autism Spectrum

a. New Pervasive Developmental Disorders

4

XI. Switch in Diagnostic Category

a. Autism vs. Mental Retardation

XII. Autism Awareness

a. Autism Education

b. Autism Speaks

c. Organizations and the Media

i. California Study

XIII. Autism Epidemic Misunderstanding

a. Prevalence Relative to Population

b. Epidemic and Attention

c. Lack of Adults

XIV. Implications

a. Accuracy

b. More Knowledge

c. Help Children

XV. Conclusion

5

Symptoms:

Poor behavior, limited communication skills, repetitive actions and hobbies, restricted

educational growth, lack of interpersonal skills

Diagnosis: Autism

As a junior therapist for a behavior analysis therapy program, I have seen many children

with autism spectrum disorders, ranging from high-functioning to low-functioning. For the past

two summers, I have worked with a boy named Geoffrey. Geoffrey is sixteen years old,

diagnosed with autism at the age of three. Upon looking at Geoffrey, one cannot tell that he is

any different from other teenagers his age. Geoffrey has brown hair, blue eyes, and is skinny and

tall. He wears brand names like 17th Street and Hurley, and he loves to draw, swim, and play on

the iPad.

What people do not realize at first is that Geoffrey is different; he has autism. He loves to

swing on the swing set and often serenades me with Disney songs at the top of his lungs. Every

day when I come into work, Geoffrey tells me, “Miss Katlyn, owls cannot fly” or “sharks do not

eat meat,” sure that his answer is correct. When asked where to find clean clothes, Geoffrey

often says the kitchen or the bathroom. His math skills include addition and subtraction, and he

can only write his name. He does not interact with other children unless prompted to do so, and

his language skills are that of a toddler. Geoffrey also has an infatuation with “tummies” and will

touch anyone’s if it is showing. All these things make Geoffrey unique, but at the same time,

they brand him as different and socially unacceptable.

Once when at the park, Geoffrey was swinging on the swing set next to a girl around five

years old, making animal sounds as he often does. The girl’s mother then comes up to the girl,

pulls her off the swing set, and tells her that it’s not good to swing next to him because “he’s just

not right.” Though he is six feet tall and is older than the usual child on the playground, Geoffrey

6

is harmless. He was not bothering the woman or her daughter, yet the woman could not accept

that a boy with autism was swinging next to her child. It astonished me that anyone could ever

regard a child with disability the way this woman did, and I began to question just how many

people have the same mindset.

Many people still view autism as a disgrace because they know close to nothing about the

disorder, and often what they do know is a skewed representation. Even as someone immersed in

the world of autism for years, I realized I only skimmed the surface of autism information.

Wanting to know more, I asked myself some very important questions: Is there truly an autism

epidemic? How do things such as methodological factors and heightened awareness affect autism

prevalence rates and thus determine the instance of an epidemic? What are the implications of

autism prevalence on children such as Geoffrey?

The prospect of an autism epidemic is not likely, and most influx of autism in the past

seventy years is due to increased autism awareness, change in diagnostic criteria, alteration of

age of diagnosis, fluctuation from mental retardation to autism, and a general misunderstanding

of what an epidemic truly entails. These methodological factors contribute to an appearance of

an autism epidemic as rates increase steadily, but a critical analysis of these factors will help

disprove such an event.

Autism Spectrum Disorders

The term autism spectrum disorder encompasses a variety of pervasive developmental

disorders. Although many see autism as the only disorder of the autism spectrum and often

generalize those with autism spectrum disorders as having autism, this is not the case. The

disorders on the autism spectrum include traditional autistic disorder, Asperger’s syndrome,

7

childhood disintegrative disorder, Rett Syndrome, and pervasive developmental disorder not

otherwise specified (PDD-NOS).1 In order to understand the implications of a broadened

spectrum on autism prevalence, it is critical to understand the variation of different disorders.

Specifically, it is important to focus on the newer disorders associated with autism spectrum

disorders because their inclusion broadens the amount of people classified as having autism, thus

affecting prevalence rates.

Asperger’s syndrome is considered a milder autism spectrum disorder, classified by D.

Hirsch as “clinically significant impairment in social interactions and repetitive or stereotyped

patterns of behavior, but no particular problem with cognitive functioning.” Unlike those with

autistic disorder, those with Asperger’s syndrome have no delays in language ability or cognitive

skills. Many times, those with Asperger’s are able to attend regular schooling and can function in

society. The most notable symptom of Asperger’s is the inability to carry on typical

conversation, the misinterpretation of social cues, and the repetition of behaviors and interests

which are often below the individual’s age group.2

Childhood disintegrative disorder occurs when “previously normal children who do not

have a degenerative disease inexplicably undergo a catastrophic global regression…and become

autistic, most often between the ages of three and six years,” as indicated by I. Rapin.3 The

disorder is extremely rare, affecting fewer than two children per 100,000, most of which are

male. The time before childhood disintegrative disorder sets in is much larger than that of Rett

syndrome, the symptoms not usually appearing until three or four years of age.4

1 “Autism fact sheet.” (04 November 2011). National Institute of Neurological Disorders and Stroke. Retrieved from http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.2 Hirsch, D. (2009, September 3). Asperger's syndrome. Retrieved from http://www.webmd.com/brain/autism/mental-health-aspergers-syndrome.3 Rapin, I. (2002). “The autistic-spectrum disorders.” The New England Journal of Medicine, 347(1), 302-303.4 “Autism spectrum disorders.” (08 December 2010). National Institute of Mental Health. Retrieved from http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml.

8

Rett syndrome is also a rare form of autism that affects primarily females. It is the only

form of autism with a known genetic cause. Oddly, a female child with Rett syndrome appears to

have normal development until the onset of the disorder, talking and walking as a typical child

would. Around the age of twelve to eighteen months, the girl loses these abilities and often

makes hand wringing motions, and she becomes severely handicapped by three years of age.

Other symptoms include seizures, irregular breathing, difficulty breathing, and a curved spine.5

Pervasive developmental disorder not otherwise specified is the remaining autism

spectrum disorder that characterizes those with developmental delays that do not meet the

criteria for autistic disorder or Asperger’s syndrome and do not have Rett syndrome or childhood

disintegrative disorder. This disorder includes those with mild autism or those that have

symptoms in one area but not another, such as social delays but not cognitive delays.6

Evidenced by the number of disorders in the autism spectrum and their variation in

severity and symptoms, autism is not an easily defined or understood disorder. Those with

autism range from low-functioning to high-functioning, savants, or those with below normal

intelligence or development that display a special talent or ability,7 and severely mentally

disabled. Many of the most talented historical figures, including Albert Einstein and Isaac

Newton,8 are now speculated to have autism. The variation of the autism spectrum contributes

significantly to high prevalence because as new disorders were discovered, the amount of people

that fit into the disorders’ boundaries increased.

Prevalence vs. Instance5“Symptoms distinguishing rett syndrome and autism identified.” (2003). Genomics & Genetics Weekly, 43.6 Mesibov, G.B. (1997). Ask the Editor: What is PDD-NOS and how is it diagnosed? Journal of Autism and Developmental Disorders, 27(4), 497-4987 Davidson, T. (2011). “Savant syndrome.” Encyclopedia of Children's Health, Edition S.8 “Famous people with autism.” (2011). Autism Epicenter. Retrieved from http://www.autismepicenter.com/famous-people-with-autism.shtml.

9

Prevalence, how commonly a disease occurs in a population, is often used to measure

autism rates because it is difficult to pinpoint the incidence, or rate of occurrence of new cases of

a disease, of autism. To gather prevalence rates, one would take the known number of persons

with the disease and divide that number by the number examined for the disease. On the other

hand, incidence is calculated by the number of new cases in a defined time period divided by the

total population number. Ideally, autism incidence would be a more accurate representation of

autism because it reveals the extent of the disorder over time instead of just measuring the risk of

the disease at any point, but it is hard to calculate because so many have autism and many cases

go unreported or undiagnosed. It is incidence, not prevalence, which determines the likelihood of

an autism epidemic, yet many people base an autism epidemic on the increase in autism

prevalence rates.9 Because autism studies use prevalence as a rate of measurement, it is the

prevalence of autism that should be analyzed as one reviews methodology’s effect on autism

rates.

Prevalence Studies

To determine prevalence rates of autism, there are a few methods that can be used.

Oftentimes, investigators will simply count all the previously diagnosed instances of autism

spectrum disorders from a given population. Other times, they will review records of high-risk

locations such as special education schools or hospitals for possible undiagnosed cases. The last

and most accurate way is to study an entire population of an area and determine which of the

population have autism spectrum disorders. This method is the most reliable one, and the rate is

often highest with this.10

9 Roe, B., and Doll, H. (2000). Information point: Prevalence and instance. Journal of Clinical Nursing, 9(2), 188.10 Scahill, L., and Bearss, K. (2009). “The rise in autism and the mercury myth.” Journal of Child and Adolescent Psychiatric Nursing, 22(1), 51-53.

10

When looking at prevalence studies, the first thing one must take into consideration is

whether or not the study is observing autism spectrum disorders or simply autism. Rates for

autism spectrum disorders are higher than those for autism simply for the fact that the autism

spectrum includes autism as well as four other disorders. Should one compare a study for autism

spectrum disorders with one for autism, the comparison would be inaccurate.

Another thing to deliberate is the age group studied. Comparison of a study conducted on

adults diagnosed prior to 1994 with another conducted on children diagnosed in the 2000s would

be unfair; the diagnostics used were different, and therefore rates would be skewed. Also, it is

more likely that cases were misdiagnosed or undiagnosed in earlier years than current ones, so

comparing those is an inaccurate representation of prevalence increase.

Another important clarification is the population surveyed. A population of high-risk

persons will have a different prevalence than a total population, including people not likely to

have autism spectrum disorders.11

The variation of methodology and population among studies conducted to determine

autism prevalence greatly affects outcomes and thus can cause misunderstanding amongst a

population that thinks there is an increase of those with autism spectrum disorders.

Current United States Prevalence Estimates

The frequency of autism overall has undoubtedly increased year by year. In one study

conducted in the United States in 2006, the reported prevalence of autism spectrum disorders for

11 Williams, J. G., Higgins, J. P. T., and Brayne, C. E. G. (2006). “Systematic review of prevalence studies of autism spectrum disorders.” Archives of Disease in Childhood, 91(1), 8-15.

11

developed countries was 60 per 10,000, or .006 percent. In past years, the reported prevalence in

developed countries was only five per 10,000 persons, or .0005 percent.12

Prevalence of autism varies between countries and between studies, even those from the

same country. To show this disparity, a comparison of studies from the United States is useful.

One study conducted in 2006 by L. Scahill and K. Bears indicates that, “prior to 1980, the

prevalence of autism was estimated at four cases per 10,000. Using better survey methods and

broader diagnostic criteria, the prevalence of autism is now estimated at 20 per 10,000

children.”13 For another study in the United States conducted by C. Rice, the reported prevalence

for 2006 was nine per 1,000 children aged eight, or .009 percent.14 These studies were conducted

within the same year, yet the prevalence fluctuated between them.

Average cases per 10,000 in the United States15

Possible Reasons for More Cases

It is clear that more cases of autism spectrum disorders exist now than in years past. Not

so clear is the reasoning behind this increase. It remains uncertain whether the continued rise is a

true increase in the disorder’s actuality or not. Some specialists theorize that there may be more

12 Newschaffer, C. J., Croen, L. A., Daniels, J., and Giarelli, E. (2007). “The epidemiology of autism spectrum disorders.” Annual Review of Public Health, 28(1), 235-258.13 Scahill, L., and Bearss, K. (2009). “The rise in autism and the mercury myth.” Journal of Child and Adolescent Psychiatric Nursing, 22(1), 51-53.14 Rice, C. (2009). “Prevalence of autism spectrum disorders.” Morbidity and Mortality Weekly Report, 58(10), 1-20.15 Fombonne, E. (2003). “The prevalence of autism.” Journal of the American Medical Association, 289(1), 87-89.

12

cases determined because of awareness and funding. Others propose broader diagnostics that

allow for more cases. An additional theory is that earlier age of diagnosis creates an apparent

prevalence. Finally, a drop in mental retardation accompanied with the rise in autism spectrum

disorders hints at a shift of cases from one area to the next.

It is important to remember that all the proposed speculations above are only theories,

and no conclusive evidence exists to completely prove or disprove any one of them. Likelihood

of a true autism epidemic seems improbable due to the abundance of other reasons for an

increased prevalence rate, and it is more feasible that methodology and increased awareness

affect prevalence rates.

Autism Prevalence Factors

Most studies report heightened autism prevalence since years past, and it is clear that

more children are being diagnosed with autism spectrum disorders now than before, but is this

increase because of an epidemic or simply due to factors not accounted? The most conclusive

explanation is that methodological factors influence rates of autism. Change in diagnostic

criteria, a broadening of the autism spectrum, increased autism awareness, younger age of

diagnosis, and autism misconceptions and stigma affect autism prevalence rates and attribute to

the increase of autism.

Diagnostic Criteria

In discussing how methodology affects the prevalence of autism and thus peoples’

generalization that an autism epidemic exists, it is critical to analyze the broadening criteria for

determining whether or not someone has autism. It was not until the 1940s that the social

13

differences and communication problems observed in many people became known as autism.

Even with this new term, measures of diagnosis did not exist for many years, and any detections

were at the discrepancy of the physician. In 1980, the Diagnostic and Statistical Manual of

Mental Disorders finally included criteria for diagnosing autism. The 1980 criteria had six

mandatory points that had to be evident in the person to diagnose the disease, standards that were

rigid in nature and allowed for only those with severe or highly evident autism to become

diagnosed.16 The 1980 criteria also changed autism’s category to pervasive developmental

disorder from its previous category of psychiatric disorder.17

This criterion was comprehensive for the time, but upon its update in 1994, sixteen

criteria existed, but only half needed to be met in order to diagnose the developmental disorder.

Not only is the 1994 criteria broader in number, but it is also more vague in wording. As quoted

from the study by Morton Gernsbacher, Michelle Dawson, and H. Hill Goldsmith “Three

Reasons not to Believe in an Autism Epidemic,” “to qualify for a diagnosis according to the

1980 criteria and individual needed to exhibit ‘a pervasive lack of responsiveness to other

people’…in contrast, according to 1994 criteria an individual must demonstrate only ‘a lack of

spontaneous seeking to share…achievements with other people.’” Clearly, the wording is less

stringent, which contributes to more autistic persons after 1994. From 1980 to 1994, autism was

rigidly defined and had many stipulations that inhibited people from becoming diagnosed, but

with the inclusion of newer, broader criteria in 1994, autism diagnosis is generalized and thus

allows for more diagnosis.

16 Gernsbacher, M.A., Dawson, M., and Goldsmith, H. (2005). “Three reasons not to believe in an autism epidemic.” Current Directions in Psychological Science, 14(2), 55.17 Wazana, A., Bresnahan, M., and Kine, J. (2007). “The autism epidemic: Fact or artifact?.” The American Academy of Child Adolescent Psychiatry, 46(6), 721-730.

14

South Korea Study

In an article published by the American Journal of Psychiatry titled “Prevalence of

Autism Spectrum Disorders in a Total Population Sample”, researchers conducted a study of

Autism prevalence in South Korea by screening all 7- to 12-year-old children in the South

Korean community of Ilsan. The study used a high-probability group from special education

schools and a low-probability, general-population sample from regular schools. They then used

the Autism Spectrum Screening questionnaire to determine which of the children suffered from

autism.

The study revealed an estimated 2.64 percent autism prevalence rate in total, 1.89 percent

of prevalence from the general-population sample and .75 percent from the high-probability

group. They also found that Autism Spectrum Disorder characteristics differed between the two

groups with 2.5:1 ratio of male-to-female in the general population and 5.1:1 in the high-

probability group.

Two-thirds of autism spectrum disorder cases were in the main-stream population,

undiagnosed and untreated, which suggests that there are many people worldwide that have

remained undiagnosed with autism. More screening of full populations must be done to produce

accurate prevalence estimates of Autism worldwide. Those undiagnosed contribute to the theory

that the “hidden hoarde” of autistic people recently diagnosed are those that were undiagnosed or

misdiagnosed previously. This study also suggests that variation in Autism prevalence from

different studies of the same country could be attributed to the choice of study population as well

as the methods of study.18

18 Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., and Grinker, R. R. (2011). “Prevalence of autism spectrum disorders in a total population sample.” The American Journal of Psychiatry, 168(9), 904-912.

15

Autism Spectrum

Along with the broadening of criteria came an expansion of the autism spectrum with the

inclusion of the other pervasive developmental disorders. The criteria for 1980 only included two

categories for autism, infantile autism and childhood onset pervasive developmental disorder.

Upon the renewal of diagnostic criteria in 1994, five categories arose, altering the previous two

and adding even more.19 These five are the previously mentioned autistic disorder, PDD-NOS,

Asperger’s syndrome, Rett Syndrome, and childhood disintegrative disorder.20 In their study on

autism prevalence, Gernsbacher et al point out Asperger’s syndrome and PDD-NOS as “milder

variants [of autism spectrum disorders] that can account for nearly three-fourths of current

autism diagnosis.”21 These two disorders were not named prior to 1994, but people with the

disorders still existed, undiagnosed. The overwhelming number of people diagnosed with these

two diseases exhibits that the rise in autism prevalence can be attributed to changes in

diagnostics.

Autism Prevalence vs. Mental Retardation Prevalence22

19 Gernsbacher, M.A., Dawson, M., and Goldsmith, H. (2005). “Three reasons not to believe in an autism epidemic.” Current Directions in Psychological Science, 14(2), 55-56. 20 “Autism types: Clearing up the confusion.” (2011). Autism Epicenter. Retrieved from http://www.autismepicenter.com/autism-types.shtml.21 Gernsbacher, M.A., Dawson, M., and Goldsmith, H. (2005). “Three reasons not to believe in an autism epidemic.” Current Directions in Psychological Science, 14(2), 55.

16

Switch in Diagnostic Category

A correlation between a rise in autism and a decrease in other diagnostic categories, such

as mental retardation, has a large impact on disproving the instance of an autism epidemic. Since

the inclusion of autism spectrum disorders as a category in special education diagnostics, there

has been an increase in autism spectrum disorders, yet an almost identical decrease in mental

retardation. The average prevalence of autism spectrum disorders increased from 0.6 to 3.1 per

1000 from 1994 to 2003, yet mental retardation declined by 2.8 and 8.3 per 1000.

This correlation suggests that the increase of autism prevalence occurred as people

previously considered mentally retarded moved into the autism category. Autism spectrum

disorders did not have a place in diagnostics, and therefore those with autism fit best into the

mental retardation category. Once autism was identified, those with the disease misrepresented in

the other category were put into the right one, creating the influx.23

Autism Awareness

Though not much is documented about autism, its cause remains a mystery, and the cure

for this disorder is unknown, scientists today know significantly more about autism than they did

in previous years. Autism education has also reached a broader public; a large part of the

population knows what autism is and is aware of its symptoms. Years ago, there were fewer non-

profit groups dedicated to broadcasting the message of autism, and the disorder remained in the

shadows. Today, this has changed.

22“Five easy graphs.” (January 2009). A Photon in the Darkness. Retrieved from http://photoninthedarkness.com/?p=158.23 Shattuck, P. T. (2006). “The contribution of diagnostic substitution to the growing administrative prevalence of autism in us special education.” Journal of the American Academy of Pediatrics, 117(4), 1028-1037.

17

By simply reviewing the Autism Key website’s page of Autism Organizations, one sees

that there are hundreds of societies dedicated to autism awareness, research, family support, and

resources for education.24 Autism Speaks, the “nation’s largest autism science and advocacy

organization,” was created in February 2005, only around six years ago. This shows just how

new autism awareness truly is; the most comprehensive site for autism, which funds research

through fundraising, holds charity walks nationwide, assists parents in accepting their children’s

diagnosis, and much more, is just in the making.

Though a recent creation, Autism Speaks “created a media blitz on behalf of autism

awareness in its first year through regular appearances in a variety of media venues” and raised

an extraordinary forty million dollars in only one year of its creation, only two of its outstanding

accomplishments in 2005. This great leap forward in autism advocacy in such a short period of

time indicates just how quickly autism awareness initiatives have and continue to flourish. With

this spread of awareness, people have become more accepting and no longer fear the disease,

realizing that an autism diagnosis is not the disastrous sentencing it once was seen as.25

Many scientists agree that an increase in autism awareness contributes to an increase in

the number of cases of the disease because, just like attention deficit disorder, parents are more

likely to suggest diagnosis of autism in order to get medication and the benefits that come along

with the labeling of autism. Also, many feel that there needs to be an autism epidemic in order to

call attention to the disorder. The organizations that focus on autism use this to their advantage,

and the “epidemic” idea became fueled by media misinterpretations and the desire of awareness

and research groups to gain funding. Roy Richard Grinker, anthropologist and autism researcher,

24 “Autism organizations.” (2011). Autism Key. Retrieved from http://www.autismkey.com/autism-organizations/.25 “2005 Highlights: Raising public awareness.” (2005). Autism Speaks. Retrieved from http://www.autismspeaks.org/about-us/annual-reports/2005-highlight.

18

says, “I don't agree with the way philanthropic organizations have fueled the fears of an

epidemic. An epidemic is a useful fiction for fundraising.”26

The false realization of an autism epidemic came from a report by the California

Department of Developmental Services that indicated a 273 percent increase in the number of

people with autism. The study took two groups of persons with autism, one group born between

1983 and 1985, and the other between 1993 and 1995. Again, the diagnostic criteria changed

from these two time periods, which caused an inequality in the methods of detection and a

fallacy in the statistic given for increase. The California Institute furthered this report by

determining that there was no evidence supporting that diagnostics had any influence on the

increase, a fact that was not supported by data. Though this report had fallacies, it made media

attention nationwide and is referenced in many online sources today.27

Autism awareness has both its praise-worthy notions and fallacies. On one hand, the

education of autism to the public has brought autism from the shadows and has eradicated many

stigmas of the disease, yet on the other hand, it has also brought false ideas to the public through

media’s misrepresentation of the facts. In regards to autism prevalence and the notion of an

autism epidemic, this misrepresentation proves harmful to the people’s impression of the

disorder.

Autism Epidemic Misunderstanding

Autism is a relatively new disorder of which many people are only beginning to skim the

surface. An increase of children with autism indicates to the public that an epidemic is occurring

simply due to the fact that there are more known cases. An epidemic, or unusually high

26 Radford, B. (2007). “Interview with roy richard grinker.” Skeptical Inquirer, 31(6), n.p.27 Gernsbacher, M.A., Dawson, M., and Goldsmith, H. (2005). “Three reasons not to believe in an autism epidemic.” Current Directions in Psychological Science, 14(2), 55.

19

occurrence of a disease or illness in a population or area, is usually associated with

communicable diseases, such as influenza or AIDS. Though autism is not transferable between

humans, many think that an epidemic exists based on a continually increasing prevalence year by

year.

The most notable misconception of an autism epidemic lies in the idea that nine out of

10,000 people is a high percentage of the population. In reality, this is only .0009 percent of the

population studied. Even higher estimates of 60 per 10,000 only connote .006 percent of the

population studied, not even one percent. Though a prevalence increase has occurred, the overall

amount of people with autism spectrum disorders is miniscule in relation to the entire population.

Roy Richard Grinker points out that “one misconception is that we need to have an

"epidemic" to call attention to a disorder.” Because people see a huge increase in numbers of

children diagnosed, they want to call that increase an epidemic. By naming it so, the disease

becomes more important and is thrust into the limelight. As the word “epidemic” spreads

through the media, the general populous becomes accustomed to associating autism with an

epidemic. As one specialist said, “The condition has not become more widespread, but there is

more diagnosis of autism.”28 More diagnosis is not grounds for an autism epidemic and should

not be deduced as such.

Another is the idea that autism is relatively new and does not encompass adults, only

children. People forget that the children diagnosed with autism grow up to become adults with

autism. Many autistic adults live in group homes or assisted living and are limited in public

interaction; so many people never really encounter an autistic adult. Grinker reminds that, “no

one “missed or “ignored” autistic people in the past, they were just called something else, or in

28Salahi, L. (2008, October 23). “10 myths about autism.” ABC. Retrieved from http://abcnews.go.com/Health/ColdandFluNews/story?id=6089162&page=1.

20

some cases called nothing at all.”29 Since people mainly see young children with autism, the idea

that there are more new cases than cases from the past arises.

Implications

In an interview about autism prevalence, Grinker, father of a child with autism and author

of Unstrange Minds, reminds people that “higher prevalence rates don’t mean the disorder is

more common”. He sees the rates as an indication that scientists are “getting it right” and that

autism has finally come into the light as autism awareness increases. Grinker reiterates that

“autism is universal” and that “autism awareness is increasing everywhere in the world…the

increase in autism diagnoses is not a crisis but rather evidence that we're finally beginning to

address a kind of human difference that has for too long been misunderstood, misdiagnosed, and

mismanaged.”30

Scientists know more about autism, and so do parents, educators, and doctors of those

diagnosed. This allows for better care of those suffering from the disorder, and this large number

of cases indicates that the people of the world must focus on research to find a cause and a cure

for autism. In the meantime, those diagnosed must be given the proper medical and educational

attention they need.

The theory that an autism epidemic and coinciding high prevalence rates are attributed to

methodological factors and increased awareness is very likely, though it cannot be proved simply

by observing a few cases that determine correlation between these factors and prevalence. Proper

analysis of full populations and a determination of autism prevalence rates worldwide would be

helpful to determine an autism epidemic, but the idea of that happening is unlikely. Since so little

29 Radford, B. (2007). “Interview with roy richard grinker.” Skeptical Inquirer, 31(6), n.p.30 Radford, B. (2007). “Interview with roy richard grinker.” Skeptical Inquirer, 31(6), n.p.

21

is known about autism even today, much more research must be conducted to prove or disprove

any theories on an autism epidemic.

More importantly, the presence or absence of an autism epidemic is independent of the

importance of the disease. The causes of autism are still unknown, though some theories exist in

this aspect as well. Focus should be on determining the cause of autism and subsequently finding

the cure as well as spreading knowledge of autism so that children like Geoffrey can live happy,

normal lives free of stigma and difficulty.

22

Bibliography“Autism fact sheet.” (04 November 2011). National Institute of Neurological Disorders and Stroke. Retrieved from http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.

“Autism organizations.” (2011). Autism Key. Retrieved from http://www.autismkey.com/autism-organizations/.

“Autism spectrum disorders.” (08 December 2010). National Institute of Mental Health. Retrieved from http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml.

“Autism types: Clearing up the confusion.” (2011). Autism Epicenter. Retrieved from http://www.autismepicenter.com/autism-types.shtml.

Davidson, T. (2011). “Savant syndrome.” Encyclopedia of Children's Health, Edition S.

“Famous people with autism.” (2011). Autism Epicenter. Retrieved from http://www.autismepicenter.com/famous-people-with-autism.shtml.

“Five easy graphs.” (January 2009). A Photon in the Darkness. Retrieved from http://photoninthedarkness.com/?p=158.

Fombonne, E. (2003). “The prevalence of autism.” Journal of the American Medical Association, 289(1), 87-89.

Gernsbacher, M.A., Dawson, M., and Goldsmith, H. (2005). “Three reasons not to believe in an autism epidemic.” Current Directions in Psychological Science, 14(2), 55.

Hirsch, D. (2009, September 3). “Asperger's syndrome.” WebMD. Retrieved from http://www.webmd.com/brain/autism/mental-health-aspergers-syndrome.

Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., and Grinker, R. R. (2011). “Prevalence of autism spectrum disorders in a total population sample.” The American Journal of Psychiatry, 168(9), 904-912.

Mesibov, G.B. (1997). “Ask the Editor: What is PDD-NOS and how is it diagnosed?” Journal of Autism and Developmental Disorders, 27(4), 497-498.

Newschaffer, C. J., Croen, L. A., Daniels, J., and Giarelli, E. (2007). “The epidemiology of autism spectrum disorders.” Annual Review of Public Health, 28(1), 235-258.

Radford, B. (2007). “Interview with roy richard grinker.” Skeptical Inquirer, 31(6), n.p.

Rapin, I. (2002). “The autistic-spectrum disorders.” The New England Journal of Medicine, 347(1), 302-303.

Rice, C. (2009). “Prevalence of autism spectrum disorders.” Morbidity and Mortality Weekly Report, 58(10), 1-20.

23

Roe, B., and Doll, H. (2000). Information point: Prevalence and instance. Journal of Clinical Nursing, 9(2), 188.

Salahi, L. (2008, October 23). “10 myths about autism.” ABC. Retrieved from http://abcnews.go.com/Health/ColdandFluNews/story?id=6089162&page=1.

Scahill, L., and Bearss, K. (2009). “The rise in autism and the mercury myth.” Journal of Child and Adolescent Psychiatric Nursing, 22(1), 51-53.

Shattuck, P. T. (2006). “The contribution of diagnostic substitution to the growing administrative prevalence of autism in us special education.” Journal of the American Academy of Pediatrics, 117(4), 1028-1037.

“Symptoms distinguishing rett syndrome and autism identified.” (2003, October 03). Genomics & Genetics Weekly, 43.

Wazana, A., Bresnahan, M., and Kine, J. (2007). “The autism epidemic: Fact or artifact?.” The American Academy of Child Adolescent Psychiatry, 46(6), 721-730.

Williams, J. G., Higgins, J. P. T., and Brayne, C. E. G. (2006). “Systematic review of prevalence studies of autism spectrum disorders.” Archives of Disease in Childhood, 91(1), 8-15.

“2005 Highlights: Raising public awareness.” (2005). Autism Speaks. Retrieved from http://www.autismspeaks.org/about-us/annual-reports/2005-highlight.