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Running head: AUTISM IN AMERICA 1

Autism in America: The Lack of Early Diagnosis

Mya L. Clark

First Colonial High School


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Abstract

This research paper highlights the lack of early diagnosis of autism in America. The paper first

addresses the problem and then defines autism. It then compares autism to ADHD/ADD and how

autism is different because it is a spectrum disorder. The paper then talks about Hollywood’s

Rain Man and it opened doors to understanding autism. Early signs is then talked about and what

to look for. Then the author writes about the issue, the underlying purpose of the paper. Then the

paper talks about education because of the importance that it has in the diagnosis of autism. Then

legality is discussed as well as The Nation’s Largest Research Project. The paper refers to two

court cases: Amanda J. ex. Rel v. Annette J. v. Clark County School and Endrew F. v. DOuglas

County School. The paper then ends with the application and conclusion.
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Autism in America: The Lack of Early Diagnosis

Autism Spectrum Disorder has the potential of being discovered at an early age of two

years old, but a diagnosis is usually rare until age four. The ideal age of diagnosis is around

12-18 months old. The concerning part is that parents begin to notice developmental issues

around this time of the child’s first birthday. If the signs are showing so early on, why are they

being ignored? What makes parents wait and doctors hesitate? This is where the issue lies. Signs

are being ignored by the people who are supposed to catch them. Physicians are stopping at the

first disorder that makes sense, rather than doing their job. Studies show that education can help

the developmental process for kids with autism, but only if they are diagnosed early on. If there

are studies that prove diagnosing a child with autism early benefits them and their families, what

is the wait? The lack of early diagnosis of autism in America blocks the work that education can

do to decrease its effect on a person’s life.

Autism

Defining Autism

Autism is, according to the Webster’s Dictionary, “a pervasive developmental disorder of

children, characterized by impaired communication, excessive rigidity, and emotional

detachment.” This disorder affects about one percent of the world’s population (CDC, 2014, as

cited by Autism Society). The usual early signs that begin a process of seeking out results are

avoided eye contact and reduced communication. The process begins with screening. The first

test that a child will encounter is developmental screening. This test will tell whether or not a

child is learning basic skills around the time they are supposed to. The screening takes place at

nine months, 18 months, and 24 to 30 months. These tests are sporadic to detect any delays in
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development. If the doctor notices any issues, they will then conduct a comprehensive

evaluation. This test is more thorough, as it goes into the child’s biological background. The

doctor will test the child’s neurology, hearing and vision, and even their genetics. These tests

should take place early on to provide an answer for parents and their children and to prevent a

regression in the child’s development (Autism Spectrum Disorder (ASD), 2016). These tests and

their necessary medical requirements are protected and highlighted by laws. Their importance

should be noticed and acted on.

Autism vs. ADHD

Most people don’t know the difference between autism and ADHD. Both are disorders,

but on completely different levels. ADHD stands for Attention-Deficit/Hyperactivity Disorder.

This disorder is diagnosed usually within the first few years of school. It can last for years or be a

lifelong disorder, but it can’t be cured. The symptoms may not always show, but will always be

present in that person’s life. ADHD classifies as a biological condition. The disorder highlights

the someone’s difficulty to concentrate and their impulsivity. Although it can’t be cured, it still

can be addressed and symptoms can be reduced. A few signs that indicate ADHD are being

easily distracted, having tantrums or meltdowns, trouble with directions or authority, interrupting

people, and struggling with social skills and personal space. The struggles often cause frequent

negative feedback because it does affect a child’s social life, making them feel like an outsider.

While ADHD is a more specific disorder, autism is a spectrum disorder. In other words, it is a

wide ranged disorder with many types that can be diagnosed. The different types are the classic

autism disorder, Asperger syndrome, Rett syndrome, and the Pervasive Developmental Disorder.

Autism is best known for the included challenges in social skills and communication. The signs
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that fall under the autism spectrum disorder are avoiding eye contact, delayed speech, upset due

to change in routines, struggle with social skills, excessive body movement that is soothing,

obsession over interests, difficulty understanding nonverbal cues, lack of empathy, and trouble

with safety of danger awareness. The most common of the symptoms is the lack of

communication. This usually defines the issue with the disorder. Lacking communication skills

affects a person’s ability to be social and this is the saddest part of both disorders. Not only does

it affect their social lives, but their education. They are set aside and forgotten about. The

disorders differ greatly, but they both strip away the natural social life and educational

opportunities of a child (Morin, n.d.).

Rain Man

Hollywood portraying a realistic idea well is hard to come by, but in 1988 Rain Man was

released, an introduction to the acceptance of autism and all disorders alike. Raymond Babbitt,

played by Dustin Hoffman, is a character with autism spectrum disorder, possibly a first

introduction to the savant syndrome. The savant syndrome is a rare condition where someone

with mental disabilities show signs of ingenious, unlike others with that disability. Rain Man is

the most well-known account of savant syndrome, but the movie provides a first accurate

representation someone with autism (Treffert, 2009).

Early Signs

When autism appears early on, it can be detected in infancy and early childhood. Some of

the earliest cases have been around for twelve to eighteen months. The thing to note when

looking for signs of autism is an absence of normal behavior rather than a presence of abnormal

ones. Detecting autism comes down to three main areas: communicating verbally and
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nonverbally, relating to others and the world, and thinking and behaving flexibly. Often, when

autism shows in the early childhood time period, a child will develop communication skills and

then at a certain age, begin to regress. Early signs include: avoiding eye contact, not responding

to name or familiar voice, following objects visually, making noise to gain attention, and doesn’t

share interests or enjoyment. The signs for an older child could be not being able to connect to

others or make friends, taking things too literally, their facial expressions don’t match what they

are saying, and they like to follow a rigid routine (Smith, Segal, & Hutman, 2017).

Why It’s Important​.

Detecting autism at an early age is important because treatment can be more effective. If

there are suspicions, it’s best to confirm them and not ignore them. According to Mukhopadhyay

the author of “How can I talk if my lips don’t move?”, “any child with noticeable features of

early autism should be taken seriously and treated as if he were diagnosed with autism.”

Diagnosing autism at an early age is stressed because education can be used in treatment.

Knowing that a child has a disorder early on in their life is beneficial not only to the child, but

the parents as well. Detecting it and diagnosing it before the child is put into school will benefit

them. It allows the family to prepare for those social environments and practice strategies with

the child. The structure of education can help to teach social skills and build relationships, all

things that a child needs as they grow old (Mukhopadhyay, n.d.).

The Issue

With all of these screenings and signs it would make sense that any issue for children

with autism could be avoided. However, more often than not, autism is not diagnosed when it is

beneficial for the child. Kids go through many of their educational years without a clear
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diagnosis. The statistics for when a child should be diagnosed are very specific that it should

during early childhood, but many kids are pushed to the side. It happens often with young boys

who are “just being boys.” Most doctors go straight to ADHD or ADD because it is easy to

prescribe and “cure.” Being diagnosed at an early age is essential for kids with autism because it

provides an answer for the parents and the child. Knowing early makes it possible for the

education years to be helpful for the child’s understanding of the world around them. But is there

a reason doctors don’t consider autism from the start? How come it is a last resort? Society has

created an idea of autism that generalizes it. When we think of autism, we picture a child who

doesn’t speak or hits their head repeatedly. Although Hollywood was able to open doors for

understanding autism with Rain Man, there are still poor representations of the disorder. It is a

spectrum disorder, which means there isn’t a specific type of behavior overall that makes it

obvious. This means that the same kid that is throwing what appears to be a temper tantrum,

could have the same disorder as a child sitting by themselves in the back of the class, or even a

child in the middle of a group. However, a stigma has been placed with the disorder. One that

doesn’t reveal the reality of autism. Because society has glorified this stigma, doctors can

sometimes be guilty of falling to the generalization too. This is a reason why many kids are

either misdiagnosed or underdiagnosed, further reducing their quality of life.

Education

The school system, with all of its flaws, can sometimes be helpful when it comes to

children with autism spectrum disorder. A diagnosis can be made reliably by the age of two,

making the school years essential for the child’s development. Diagnosing in this time frame is

crucial because once the child can go to school, they’re education can be used as a tool for
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treatment. Although it can’t cure autism, it can make the child’s life easier by introducing them

to strategies for social environments, putting them ahead of their disorder. In the classroom there

are strategies of making it an autism-friendly environment, a place where children with autism

can learn. Visual aids are a way to communicate to children who can’t communicate ¨normally¨

with the world. A ¨visual schedule¨ gives the child a hands on idea of the day´s activities. This

helps to relieve a child’s stress because children with autism are often overwhelmed by a lack of

structure. When the child can clearly see the day’s activities before they happen, the child can go

into it without any stress. Having structure and a routine is another strategy that helps because

children with autism have a hard time dealing with change. The routine will help the transition

between activities. With high levels of anxiety among many children with autism, a classroom

can be hard to control. However, there are strategies to maintain order and keep the anxiety

levels down. Teaching a child concepts to improve social and emotional scenarios can bring the

stress levels down, bettering the child's school experience and their life ahead. This practice is

preparing for a social scenario that is to happen in the future ("Education & Autism Spectrum

Disorders," n.d.).

Legality

In an interview, Linda S. Young, a spokeswoman for those with Autism who was

diagnosed in her late adult years, stated that her go to when it comes to laws dealing with autism

was “The Americans with Disabilities Act.” This civil rights law prohibits discrimination based

on a disability (" ADA.gov," n.d.). Laws can be hard to come by because putting a law or rule a

on disability has to cover the broadness of that disability. The laws on the diagnosis of autism

require “medically necessary” assessments, evaluations, or tests to diagnose whether someone


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has autism spectrum disorder. Those assessments are known as developmental screening or an

M-CHAT screening. The screening is advised to happen for all children around eigthteen to

twenty-four months. The screening is only effective, however, when it is applied to all children

rather than just those who show signs. The screening can act as an intervention for children with

symptoms of autism. The M-CHAT screening is a twenty-three point questionnaire that is filled

out by the parents. This screening makes it easy for doctors to pick up on a child with autism and

start the process early by discussing language delays and possible developmental screening.

These beginning screenings start the early process ("How Pediatricians Screen for Autism,"

2016). Some of the only laws on autism have to do with education. The Individuals with

Disabilities Education Act is the federal law that guarantees a free and appropriate public

education without a restrictive environment for all students with disabilities. The IDEA is the

amended law of the Education for All Handicapped Children Act. The IDEA further defines a

child’s rights. The right highlights the idea that placement in education should be on a individual

basis, rather than the category of the disability ("Educational Mandates," n.d.). Coverage for

autism spectrum is highlighted under section 38.2-3418.17 of the Code of Virginia. The code

states that autism spectrum disorder is any pervasive developmental disorder that includes

autistic disorder, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder, or

Pervasive Developmental Disorder. It addresses the “Behavioral health treatment,” which is

described as professional, counseling, and guidance services and treatment programs that are

necessary for maintaining development. The law also states the diagnosis of autism spectrum

disorder means “medically necessary assessments, evaluations, or tests” that diagnose autism.

The law then describes “medically necessary” as based on evidence and anything reasonably
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expected to do anything from preventing illness to achieving maximum functioning. Another

aspect talked about in the law is the treatment for autism spectrum disorder. This could be a

treatment plan that includes care that is prescribed or ordered by a medical professional. The

examples of treatment plans are behavioral health treatment, pharmacy care, psychiatric care,

psychological care, therapeutic care, and applied behavior analysis. A treatment is developed by

a licensed physician or psychologist that has already conducted a comprehension evaluation or

reevaluation. This law was put into act in 2014 as part of the Affordable Care Act. This made is

so that treatment for autism spectrum disorder was affordable and necessary. (Code of Virginia,

Title 38.2)

The Nation’s Largest Autism Research Project

The study took place all over the country. People used their computers to answer a

questionnaire. The reports were published from time to time to update the autism community and

show what they contributed to the study. One report revealed that children with autism were

bullied at a high rate and were often provoked into a meltdown. The results of the study were a

sixty-three percent of one-thousand, one hundred and sixty-seven children (ages six to fifteen)

with autism were bullied at some point in their life. A more important study to this paper is one

published in February of 2010. It focused on how long a concerned parent will wait to take the

necessary steps toward diagnosis. The process is long and emotionally straining, but there is a

significant number of people who wait out of fear. The ¨first signs¨ that appear on many websites

about autism are a way for parents to look into their concerns. The loss of skills or regression

seems like an abrupt change that happens almost overnight. Many parents who express concern

are told to not worry and that ¨he´s just a boy.¨ This is a common excuse made by many doctors
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and pediatricians, but this stigma is starting to be discarded because they are being told not to

dismiss concerned parents. The average age of concern for the parents participating in IAN

research was around 1.4 years, 1.6 years for children with pervasive developmental disorder, and

2.6 years for asperger's syndrome. The gap between these first concerns and the actual diagnosis

was a surprisingly long time. This gap stunts the importance of early intervention. Parents of

children with autism waited on average around 1.7 years, 2.1 years for children with pervasive

developmental disorder, and children with asperger's syndrome waited around 4.6 years. The

average age for diagnosis of autism is 3 years (IAN Research Project: A Bewildering Range of

Possibilities). The disorder can’t be put into two categories of “low functioning” or “high

functioning” and this is what makes it a spectrum disorder. Most often, people with autism were

once labeled as something previously before being diagnosed with autism. The diagnosis is

usually more general. Parents that participated in the IAN research reported their child obtaining

a number of labels before the actual diagnosis of autism. Some of the diagnoses were bipolar

disorder, attention deficit hyperactivity disorder, or oppositional defiant disorder. Telling a

parent that their child has a disorder that isn’t accurate is difficult on both the parent and the

child. A common first result for many doctors is ADD/ADHD, but when a family is able to reach

the final, accurate diagnosis it can be a relief for them. The research reported that 39 percent of

the children in the study received an initial diagnosis of ASD, where 32 percent received an

initial diagnosis of PSD, and about 14 percent received their initial diagnosis as asperger’s

syndrome. The final 15 percent of the study received a general diagnosis. The study found a

change in ASD’s diagnosis. There has been a 25 percent change in the first diagnosis. The

DSM-V has undergone revision and was published in 2012. The changes not only help parents,
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but prevent them from choosing a label that receives more attention or care (IAN Research

Project: From First Concern to Diagnosis and Beyond). Parents with children who have autism

should not have to stress out over diagnoses. This study helped to make aware the amount of

time and the holes in the diagnosis process that made autism such a hard disorder to identify.

Court Cases

Amanda J. ex rel. Annette J. v. Clark County School

In this case Amanda is denied the proper attention to being diagnosed early on in her life.

When Amanda was two years old she was evaluated and found with “moderately low”

communication and daily living skills. She was again evaluated around her third birthday by a

psychologist named Mark Kenney. The report indicated that her results under the Autism

Behavior checklist were “mixed.” Not only was the report vague, but Amanda’s mother was not

given the actual written report. Her mother also claimed that Kenney had never discussed

recommendations with her. She was then evaluated by the school nurse who found nothing

wrong with her health except for a concern about her hearing, however, Amanda’s mother never

consented to an audiological evaluation. Amanda was finally diagnosed with autism on January

10, 1996 by Dr. Hansen. She was found to be “severely autistic” under the Childhood Autism

rating scale. Her parents decided to go to court because of the lack of treatment and the

vagueness of the numerous doctors they had gone to. The rule of law used in the case was the

IDEA, the Individuals with Disabilities Education Act. Her parents felt that the IDEA law had

been violated and that they had been denied their right to being informed and apart of the

process. The court recognized the neglect of the parents. The case was reversed and remanded
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and stated that parents may request copies of records if there is a failure of being provided

(Amanda J. ex rel. Annette J. v. Clark County School).

Endrew F. v. Douglas County School

Endrew was a child with autism who acquired an IEP from preschool to fourth grade. His

parents noticed that there was no progress. They expressed their concerns to the school, and they

decided to add revisions to the IEP. After this, the parents put Endrew in a private school and

noticed progress. This school presented a “new” IEP that resembled the old one at the other

school. This infuriated the parents, and they filed for reimbursement from the private school.

Their request was denied. The parents then took the issue to court. In court, Endrew’s parents

argued the IEP specific to their son did not set up a learning environment that was equal to other

students. The court’s final decision was unanimously for the Douglas County Schools. They said

that the IEP was “reasonably calculated to enable him to make some progress” (Endrew F. v.

Douglas County School District RE-1).

Application

Autism spectrum disorder needs more recognition. It is not ADHD/ADD or boys “just

being a boy.” The stigma that our country has placed on autism makes it appear as a hushed

thing. Light needs to be shed on the disorder and the flaws in the medical field that heighten the

disorder. The quality of life for children with autism spectrum disorder is ignored because of the

stigma. Kids who have autism should not be denied their basic right to live a life of quality.

Education has been proven to benefit a child with autism because it can be used as a treatment

outlet. The educational system has flaws as well, but it does help these children and being

diagnosed before those years is essential to starting treatment. It becomes a new environment for
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these kids that challenges their disorder. Children with autism struggle with social environments,

but a good teacher and lesson plan that is autism-friendly can benefit the child. All of these

things are beneficial to a child with autism; however, they are not able to happen because of the

lack of diagnosing children early. Families could not have a clear diagnosis for year or ever.

Many cases are ignored or the process is lengthy enough to last until high school years. Because

physicians go straight to ADHD/ADD, that is where the treatment starts. Children with autism

are put on medication that is specific to ADHD/ADD, they attend sessions with psychiatrists that

benefit someone with ADHD/ADD, and go through life thinking they have Attention-Deficit

Hyperactivity Disorder. Children with autism spectrum disorder are stripped of more than proper

education and quality of life, they are stripped of knowledge. Knowing the truth about what is

going on in their brain is a right of theirs.

Conclusion

Autism spectrum disorder should not be ignored. We have the necessary treatment

options, there can no longer be a denial to people’s rights. There are many more court cases like

Endrew’s that reveal a lack of concern for a child with autism. Endrew was denied an

educational environment that could be autism-friendly. Education’s part in treatment needs to be

used to the best of its ability. The lack of early diagnosis of autism in America has blocked the

work that education can do to decrease its effect on a person’s life. It is time that light is shed on

the reality of living a life with autism.


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