I
remember when my nephew was four years old, he still very rarely spoke. He had no trouble communicating what he wanted
by pointing at something; however, he seemed to always be frustrated because he
could not communicate his feelings. He did eventually pick up language skills,
after an extremely delayed start, but he still has a tendency to get extremely
upset over minor changes, especially if he is interrupted from concentration on
his current task. At times his play time is very rigid, but isn’t always the
case. His favorite task is stacking
blocks in very uniform patterns, but he also enjoys pretend play like Batman. He is a very affectionate child with his
parents but has an extremely hard time getting along with other children
including his siblings.
My
sister was very concerned with his abnormal development of social skills and
his delay in language skills. She had
read about autism and thought it could be a good possibility that her son could
very well be autistic; however he did not fit the criteria of autism completely
which was baffling. After several visits
to her family pediatrician, she was referred to a child neurologist for tests
to be done to determine his condition.
His diagnosis: PDD-NOS (Pervasive Developmental Disorder – Not Otherwise
Specified). Okay, that was certainly an
unfamiliar term.
Well,
it turns out that PDD-NOS is part of group of developmental disabilities called
Autism Spectrum Disorders (ASD) more recently referred to as Pervasive
Development Disorders (PDD). People
with ASD process stimulus data in their brain’s differently from the way ordinary
individuals do, which can cause considerable social, communication and
behavioral difficulties (Center for Disease Control and Prevention, 2010). Each individual case of ASD is
different. It occurs among individuals
of all levels of intelligence from mentally handicapped to genius. Some are affected severely, while others
have it very mildly. Some are coupled
with other disorders, some not. The term
“spectrum disorders” was assumed because of the wide range of symptom severity,
the various characteristics of symptoms, and the different ages that symptoms
begin to show. Autism is one of the
disorders, but it also includes Asperger’s Syndrome, and PDD-NOS (Center for
Disease Control and Prevention, 2010).
Autism
is the first type of ASD, the most well-known, and the most severe disorder in
the spectrum. It is the disorder that
people consider when they hear the word autism and is the most severe case in
the spectrum and is characterized by the stereotypical behaviors, such as lack
of imagination (Wing, 1996), routines or repetitive behaviors including “repeating
words or actions, obsessively following routines or schedules, playing in
repetitive ways, insists on sameness, and becomes distressed when routines or
rituals are changed” (National Institute of Child Health and Human Development,
2010). It also includes “challenges,
disabilities, or delays in the area of social communication, sharing emotions, understanding
how others think and feel, and holding a conversation.” (National Institute of
Child Health and Human Development, 2010) These symptoms may start by the age
of three, but there can be other indications of the disorder before the end of
the first year.
Autistic
individuals have trouble communicating both verbally and non-verbally, and they
tend to avoid eye contact. They may have
odd habits, like having to have their plate exactly an inch from the edge of
the table, and their food situated in a certain way on the plate before they
can eat. Instead of playing with their
toys, they may have an obsessive habit of arranging them all in a perfectly
straight line. They may spin in circles or flap their arms to express joy, or
purposely injure themselves to voice discontent. Difficulty in communication can get very
frustrating for a person living with autism and for those who care for them and
teach them. (National Institute of Child Health and Human Development, 2005) Some eventually do learn language skills, but
for others, it eludes them for a lifetime (Wing, 1996).
Because
is it a spectrum disorder, the level of severity, as well as intelligence
levels, vary from person to person. Also,
many autistic personalities are often coupled with other disorders such as
mental handicaps with IQs under 70 or Attention Deficit Disorder (ADHD). Those with IQs above 70 are considered “high
functioning autistics” and are very capable of living a fairly normal life when
receiving treatment (Mesibov, et. al., 2001).
Asperger’s
syndrome is another type of developmental disorder on the autistic
spectrum. It is similar in nature to
high functioning autism, and health care workers treat it in a similar
fashion. It was first coined Asperger’s
syndrome in 1981 by an English doctor named Lorna Wing. Wing had published a collection of research
summaries about children having symptoms similar to four children that Hans
Asperger had observed in 1944 (National Institute of Neurological Disorders and
Stroke, 2011). These children of normal
intelligence did not communicate non-verbally and they had trouble empathizing
with others around them. They avoided
eye contact with others and their speech was unusually formal and monotone for
children of their age. Likewise, their
understanding of speech was extremely literal (they could not detect sarcasm).
Furthermore, they were very clumsy because they lacked proficient motor skills,
and they had a tendency to fixate on certain objects to the point of temper
tantrums if the object was removed (Stoddard, 2004).
Indeed,
the obsessive nature of children with Asperger’s syndrome is one of the first
signs that prompt caregivers into speculating abnormality (National Institute
of Child Health and Human Development, 2007).
Because of their very nature of obsession, they will talk relentlessly
about the object or subject of interest.
The topic of interest varies from person to person, but it could be as
simple as a toaster or as complex as astrophysics. As a result of their obsession, they are
extremely knowledgeable in the subject.
For instance, if the interest was a toaster, they would know precisely
how long it takes for a slice of bread to toast, down to the very second with
each setting, they would know the exact temperature that it heats to, they
would understand precisely how the wiring operates, and would probably know the
history and detailed statistics of its development and usage.
Individuals
who suffer from Asperger’s syndrome are very capable of becoming constructive,
self-sufficient adults; however, just like all ASDs, they do have trouble
socially because of their odd behaviors. Thus, the risk for them to become
severely depressed and have trouble finding a compatible mate as adults is very
high. Fortunately, many, with treatment,
learn to cope and go on to live very happy productive lives. (Aston, 2003)
Pervasive
Developmental Disorder – Not Otherwise Specified (PDD-NOS) is yet another ASD. For those with some autistic-like symptoms,
like my nephew, but do not fully meet the principles for Asperger’s syndrome or
Autism are usually categorized as PDD-NOS (Autism Speaks, n.d). Usually, people who fit into this class of
ASDs show a few very mild signs of autism, or of another type of a more clearly
distinct PDD, but does not display all of the symptoms (Morris, 2008), but
appear to be an otherwise normal. It is
usually evident that there is some insufficiency in their socializing with
family and friends, but the problem is less severe (compared with autism).
There
are really no clearly defined guidelines for diagnosing PDD-NOS which can be
problematic for investigation purposes; however, a limited amount of data
suggests that many children with PDD-NOS are diagnosed, on average, at a later
age than autistic children because lower intelligence is uncommon. In one particular study done on 216 children
with ADS, researchers have found three different basic types of PDD-NOS. The first is a high functioning group whose
symptoms were similar to Asperger’s syndrome, except they had delays in speech
and mild cognitive disability whereas with AS, there are no delays. The next group favored similarities with
autism, but acquired symptoms later in their childhood. The last group was also very autistic-like,
but had no repetitive, stereotyped behavior (Walker, et al. 2004)
When
my nephew was diagnosed with PDD-NOS, it was easy to understand. Although he does display some autistic type
symptoms like his delayed speech, his mild repetitive behavior, and his extreme
frustration when he is interrupted; however, he is a very imaginative child,
which is very un-autistic like. His
diagnosis did not place him in a sub-group, but I believe he would fit into the
last sub-group of PDD-NOS.
There
is no specific treatment for ASDs, currently; but there are options available
to help parents, health-care workers, and teachers to help with behavioral and
learning potentials. As a spectrum
disorder, people vary with the capacity to live normal or near normal
lives. For those that are
high-functioning, it is very possible for them to exist fairly independently,
with treatment; nevertheless, even for those that are the lower level scale of
functioning can benefit from behavioral management therapy and special
educational options for these individuals (Richman, 2000)
The
Applied Behavior Analysis (ABA) treatment is believed to be a good process for
children suffering from an ASD. Its
various techniques teach social interaction, basic living motor skills, and
verbal behaviors as well as reasoning skills (Mash & Barkley, 2006). Parents, health-care workers, and teaches can
use this approach for children with autism.
It can be extremely advantageous in helping them to learn behaviors that
they would not be able to absorb by themselves.
The National Institute of Child Health and Human Development (NICHD)
also consider speech and language therapy can be of great use to help them to
better communicate with others; furthermore, occupational and physical therapy
can be beneficial as well (National Institute of Child Health and Human
Development, 2005).
ASDs
do not discriminate and, although there is no conclusive evidence, it appears
to be on the rise. According to the
Center for Disease Control and Prevention (CDC), it affects people from all
different races, ethnicities, and socioeconomic backgrounds; although boys are
four times more likely to be affected than girls. A possible average of 1 out of every 110
children in the USA are somewhere within the spectrum. ASD is being diagnosed more and more
currently than previously, but it is difficult to determine the reason for this
increase. According to a study done on
children with autistic disorder enrolled in the California Department of
Developmental Services, 1987 to 1998 experienced a 273% increase in ASD cases (Mash
& Barkley, 2006). It could very well
be that there truly is an increase in cases, but it could also be possible that
better referral methods for expert diagnosis and treatment, higher awareness
and understanding of the disorder (Wing, 1996), and a broader definition of
ASDs (Center for Disease Control and Prevention, 2010) may the cause for the
increase in prevalence.
The
cause of autism and other ASDs is unknown; however, there is some interesting
information that has been noted in studies done on ASDs. There are most likely many factors involved
because of the large variety of differences in the spectrum (Bauman &
Kemper, 2004). For instance, researchers
have found in that children with autism and related disorders, their brains tend
to be slightly larger than normal. Also,
if a newborn had a small head size at birth and then all of sudden there is a
very fast growth in size before their first birthday is at risk for developing
autism. Additionally, parents, siblings,
and other relatives of a child with autism often have some symptoms of the
disorder (Yapko, 2003).
There
could be some genetic and environmental factors to consider when researching
the cause for ASDs. About one percent of people with autism have duplicated or
missing genes on one of the pair of designated chromosome. Autism could possibly be the result of the interaction of several genes that may be
on different chromosomes.
There have been reports of studies that a
positive association has been found between autism and vaccinations. The rise in the amount of vaccinations given
to children has seemed to rise along with prevalence in children diagnosed with
autism. Many individuals have a genetic
susceptibility to acquiring autism, but according to some researchers, they may
need something environmental to prompt initiation of the disorder. It could be that vaccinations for children
are the source (DeLong, 2011) in a very small amount of children (Stratton, et
al, 2001); however, the most current information provided by the CDC states
that there is no conclusive scientific evidence that any part of a vaccine or a
combination of vaccines causes autism (Center for Disease Control and
Prevention, 2010). The Immunization Safety Review committee suggests that more
research needs to be done on the subject because of limitations of evidence and
the significance of the subject (Stratton, et al., 2001).
Autism,
Asperger’s Syndrome, and PDD-NOS are very interesting disorders. Being that they are so varied from person to
person they have been placed on a spectrum in order to label them
properly. The truth is, part of the
beauty of this world is that everyone is different. Although having these disorders does cause
people to have difficulties dealing with other people, and they do need more
assistance in getting along in the world we live in, I personally believe that
the idea of disorder should be redefined.
As a person with a close relative with the disorder, I see nothing wrong
with him. He is just different. The best way to help those with an ASD is to
truly learn to understand them, love them, help them as best we can, and accept
them. Maybe if the world redefined what
normal actually is, we would be more capable of understanding how those with an
ASD see the world.
References
Aston, M. (2003)
Aspergers in Love. London, GBR:
Jessica Kingsley Publishers
Autism Speaks
(n.d.) Asperger’s Syndrome. What is
Autism? Retrieved from:
http://www.autismspeaks.org/
what-autism/asperger-syndrome
Autism Speaks
(n.d.) PDD-NOS. What is Autism?
Retrieved from: http://www.autism
speaks.org/
what-autism/pdd-nos
Morris, B.K. (2008).
http://www.autism-help.org/pdd-nos-overview-autism.htm
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