Professional Documents
Culture Documents
Mya L. Clark
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 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
Autism
Defining Autism
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
Most people don’t know the difference between autism and ADHD. Both are disorders,
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
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
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
AUTISM IN AMERICA 6
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).
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
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
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
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
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
AUTISM IN AMERICA 10
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
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 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
AUTISM IN AMERICA 11
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
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,
AUTISM IN AMERICA 12
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
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
AUTISM IN AMERICA 13
and stated that parents may request copies of records if there is a failure of being provided
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.
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
AUTISM IN AMERICA 14
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
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
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
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