Running Head: CEREBRAL PALSY: THE IMPORTANCE OF UNDERSTANDING 1

Cerebral Palsy: The Importance of Understanding

Kat Hensley (Crawford)

Northern Arizona University

AHB495C

Professor Velez

April 14, 2021

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Pre-Discussion

The focus of this paper is to raise awareness of Cerebral Palsy; to allow those of us

without it to understand the struggle, achievements and stigma surrounding those who are

diagnosed with this disease. Cerebral Palsy is one of the four qualifying diagnoses to receive

services through the Department of Developmental Disabilities. Many argue that it is the most

severe disability, holds the most medical complications and can be the most developmentally

delaying diagnoses on the DD Spectrum. Cerebral Palsy is “a result of injuries to the developing

brain occurring anytime from the first trimester of pregnancy through to early childhood”

(McIntyre et al., 2011). Unlike the other qualifying disabilities on the spectrum, Cerebral Palsy

(CP) is the only condition that guarantees physical disabilities. In addition, Cerebral Palsy can

cause speak delays/difficulties, muscle atrophy (more commonly on only one side of the body or

specific limbs or joints), and a multitude of medication conditions (such as blood clots, brain

damage, vision or hearing loss). In a study done by two separate entities, (National Survey of

Children’s Health (NSCH) and the National Health Interview Survey (NHIS)), it was founded

that the prevalence of Cerebral Palsy in children are 2.6 and 2.9 per 1000 children, respectively.

I chose this topic not only because there are people in my life that suffer from this

condition, but because there are people suffering from this condition who are not in my life.

While I am able to advocate, stick-up for, and protect those in my life, there must be more

education and awareness so that everyone affected by this condition is advocated for, protected.

Due to the fact that this disability, more so than others, is physical, people are quick to notice

those with CP. Individuals with CP look different, talk different, walk different, and may have

different needs than most; not everyone, in fact rarely, has textbook features or symptoms.

Therefore, there is a lot of stigma and ignorance surrounding CP and I would like to lessen those
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feelings of insecurity in others. Throughout this paper it is my hope to bring awareness, shed

light, and lessen the negative feelings towards individuals with Cerebral Palsy. Society’s view on

“normal” needs to change; no two people are alike and it is the differences in all of us that create

a beautiful world.

Annotated Bibliography

Christensen, Deborah, Van Naarden Braun, Kim, Doernberg, Nancy S, Maenner, Matthew J,

Arneson, Carrie L, Durkin, Maureen S, Benedict, Ruth E, Kirby, Russell S, Wingate,

Martha S, Fitzgerald, Robert, & Yeargin‐Allsopp, Marshalyn. (2014). Prevalence of

cerebral palsy, co‐occurring autism spectrum disorders, and motor functioning – Autism

and Developmental Disabilities Monitoring Network, USA, 2008. Developmental

Medicine and Child Neurology, 56(1), 59–65. https://doi.org/10.1111/dmcn.12268

This article specifically addresses the prevalence of Cerebral Palsy in Children (this

article used children who were 8 years old at the time). The article also compares the co-

diagnoses of epilepsy and Autism Spectrum Disorder is these children. The sample base

was 147,112 8-year-old children, which at the time was approximately 4% of children

that age in the united states. The importance of this study was to determine how many

children (aged 8) were currently diagnosed with CP and how that number can be relayed

to children of other ages. In order for children to be considered having Cerebral Palsy,

they must have documentation that confirms or suspects Cerebral Palsy by a qualified

professional. These professionals must be a: physician, physical therapist, occupational

therapist, nurse practitioner, physician assistant, or clinical nurse specialist in order for

the children to participate in the study (Christensen et al., 2014). It is important to

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differentiate children who are suspected by loves ones and those who are suspected and

undergoing treatment or therapies from licensed professionals. The number of children

found to have Cerebral Palsy of the 147,112 8-year-old involved was 3.1 per every 1000

children. That equates over 45,000 current 8-year-old who have CP in that 4% of children

that age. It is important that we understand that a “rare” disease is rarely truly rare.

McIntyre, Sarah, Morgan, Cathy, Walker, Karen, & Novak, Iona. (2011). Cerebral Palsy—Don't

Delay. Developmental Disabilities Research Reviews, 17(2), 114–129.

https://doi.org/10.1002/ddrr.1106

We learn in this article that there are different classifications of Cerebral Palsy. The

classifications are broken up into two categories: motor type and topography. To begin,

there are four different motor “delays” under the general term Cerebral Palsy. The article

uses the Australian Cerebral Palsy Register (ACPR) for their statistics to show how each

motor type differs in percentage present in individuals with CP. The first motor type, and

the most common coming is at 85-91% of individuals presenting with, is spasticity.

Spasticity refers to the muscles ability to stretch, or more specifically their resistance to

stretching as they should. This could also cause other concerns such as: muscle loss, joint

dislocation and associated pain. The other three motor types are much, much less

common. Coming in second is Dyskinesia; which can look like spastic or jerking,

uncontrollable movements, or writhing movements. Dyskinesia is only present in 4-7%

of people with CP. Closely following Dyskinesia, at 4-6% is Ataxia. Ataxia causes

tremors and shakiness in the areas most effected; it also involves a loss of muscle
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coordination. Lastly, coming in under 2% (many professionals discredit this as a

symptom of CP) is Hypotonia. Pire Hypotonia is a decreased muscle tone that solely

causes motor issues in an individual. Essentially, Hypotonia can be, and usually is,

present with one of the first three motor types; it is extremely rare for an individual to

only suffer from Hypotonia. The three different topographies are: Hemiplegia (38% and

involves only one side of the body), Diplegia (36% present and is where both legs are

affected and are more affected than the arms) and lastly, Quadriplegia (26% of

individuals present with this and it means that all four limbs suffer from spasticity). The

point of using this article in my paper is to express that, just like everyone else, those

with Cerebral Palsy are not all the same; they have different strengths, weaknesses and

their disabilities present different.

Matthew J. Maenner, Stephen J. Blumberg, Michael D. Kogan, Deborah Christensen, Marshalyn

Yeargin Allsopp, Laura A. Schieve, Prevalence of cerebral palsy and intellectual

disability among children identified in two U.S. National Surveys, 2011–2013, Annals of

Epidemiology, Volume 26, Issue 3, 2016, Pages 222-226,

https://www-sciencedirect-com.libproxy.nau.edu/science/article/pii/S1047279716300084

Similar to the first article I chose, this article looks at the number of children who are

diagnosed with Cerebral Palsy. Many studies are conducted on children because Cerebral

Palsy is most likely to be officially diagnosed in children, ages 4-9. Cerebral Palsy is a

“non-progressive” disability and you cannot develop CP as an adult. The surveys done is

this article were completed in two separate manners: in-person and telephonically. This is
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important because not all data collected was a result of direct contact of the children in

question. Thankfully, stigma is also addressed in this insert; specifically, in means of how

many more children were reportedly diagnosed in 2008 than in 2006 (from an original

study that the article is based upon). There are a few speculations as to why this was; but

researchers have stated that they believe the increase in “diagnoses” is really just an

increase in disclosure in the studies. Previous to 2008, the term Mental Retardation was

used to describe those with disabilities such as: Autism, cognitive delays, Cerebral Palsy,

and more. After 2008, society began using Intellectual Disability. Due to the differences

in stigma between retardation and disability, it was thought that more parents/guardians

were willing to disclose the wanted information. It is more important now than ever to

destroy the stigmas surrounding those who are not “society’s norm”; in fact, we should

rid our society of any definition of normal. Regardless of a person’s abilities or how they

look, all people deserve the same respect and inclusion.

Nelson, Karin B. (2020). ‘Outgrowing’ a cerebral palsy diagnosis. Developmental Medicine and

Child Neurology, 62(1), 12–12. https://doi.org/10.1111/dmcn.14308

This short article was written to summarize and scrutinize an article called “Losing a

diagnosis of cerebral palsy: a comparison of variables at 2 and 5  years” which was

written by: Anjellica Chen. Sasha Dyck Holzinger, Maryam Oskoui, and Michael

Shevell. The article uses data found in the Canadian Cerebral Palsy Registry; but just like

previous articles, it is important to know just how prevalent Cerebral Palsy is, and not

just in the United States. I did read the original article, written in 2019, and felt the

shorter article from 2020 covered the important aspects I wanted to address. The article
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addresses that ages that a diagnosis is warranted, what is considered suspected CP, when

the diagnoses is confirmed, and the benefits for obtaining and “suspected” CP diagnosis.

As we are all aware, our healthcare system can be bankrupting with routine care or a

single emergency surgery. For children, and adults, with Cerebral Palsy, it can be

devastating to face those medical bills even with the best private insurance. Official

diagnoses are done between the ages of 4 and 6 normally; but a pre or suspected

diagnosis can be given as early as 2 years of age. While there are some telltales in tests of

children at 2 getting a suspected diagnosis and those of children between 4-6 having that

diagnoses removed, there are often many therapies, surgeries and complications between

those ages. Getting a suspected diagnosis can help offset those costs, if for only a few

years. I chose this article specifically because I talk a lot about inclusion and closing the

stigma surrounding individuals with CP, but it is also important to keep their families and

loved ones in mind. A diagnosis or disability in any person does not solely affect that

person. Supporting parents, siblings, guardians of children with disabilities is just as an

important part of any social worker’s job.

Reid, Susan M, Meehan, Elaine M, Arnup, Sarah J, & Reddihough, Dinah S. (2018). Intellectual

disability in cerebral palsy: a population‐based retrospective study. Developmental

Medicine and Child Neurology, 60(7), 687–694. https://doi.org/10.1111/dmcn.13773

This article is especially important when we are discussing the necessity for medical

insurance, financial aid for children and families, and even societal needs (education,

work force, etc.). This article discusses the fact that Cerebral Palsy often co-exists with
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some level of Intellectual Disabilities (ID). This is due to that fact that Cerebral Palsy

occurs when the brain loses oxygen or becomes damaged for some reason (again, this can

occur from pregnancy to early childhood). When the brain is damaged, after birth, we

often see regression in the child. For example, a child who suffered a TBI (traumatic

brain injury) at 3-years-old, may lose that ability to talk, walk, their motor skills re

affected, and even lose IQ due to the injury. The study in this article founded that 45% of

individuals with Cerebral Palsy also have a comorbid disease (Intellectual Disability).

Post Discussion (Approximately 500 words)

All of these articles made a point and gave us important statistics and information on

Cerebral Palsy; both the percentages of individuals (specifically children for this paper) and how

the stigma can affect those with the disability and their families. Each of the articles that I have

included in this paper did research with more than 1000 people in each study; this is important

because it gave us accurate percentages in each area. We can often assume that the percentage of

one area can be used to determine other populations in the surrounding area. In addition, because

Cerebral Palsy is not a heredity disease, rather environmental (yes, even when the baby is in the

womb), we are able to reliably determine the population affected by this disease.

It was discovered that, in the United States, that 3.1 out of every 1000 children are

diagnosed with Cerebral Palsy. It is important to remember that the numbers in this study were

made after the children were officially diagnosed (around the age of 5), and not just those who

had suspected diagnosis. This helps remind us that, while we may not see someone with Cerebral

Palsy as often as someone with blonde hair, it is not a truly rare disease. We should all be aware

of the condition and be able to treat individuals with Cerebral Palsy, or any disability, as we
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would those without disabilities. We also should all understand the differences in Cerebral Palsy

and remember, just like everyone, not every person with CP has the same disabilities, looks the

same, or has the same abilities as another person.

Lastly, I would like to remind everyone that with brain injuries, there are often comorbid

disorders. Specifically in this paper I reported that 45% of individuals with Cerebral Palsy also

had some aspect of Intellectual Disability. What I did not speak of, were some of the other

common disabilities that often coincide with Cerebral Palsy. For example, a significant number

of children with Cerebral Palsy also suffer from epilepsy, as well as hearing and/or vision

problems. I would like to work towards a time when the stigma of mental health or physically

disabilities no longer exist. I believe that stigmas often dehumanize those suffering from the

diagnoses being looked down upon. If we have the information, we are able to make sense of the

unknown, we are able to sympathize, empathize with those suffering from disease, disorder, or

anything else that we will never know the difficulty of.