RUNNING HEAD: An Analysis of Autism Spectrum Disorder and Family Dynamics

An Analysis of Autism Spectrum Disorder and Family Dynamics

Sydney Seed

Allie Stamenkovich

James Madison University

Family Dynamics
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Outline

I. Introduction ………………………………………………………………………….. 3

II. Body of Paper

A. Lack of Coping Skills and Resources for Families and their Children……….. 4

B. Maltreatment in Families with a child who has an ASD diagnosis…………… 6

C. Males Dominating the ASD diagnosis’ and Research………...………………. 8

III. Bowenian Family System Approach………………………………………….……..… 8

IV. Positive Aspects on National Policy for ASD………………………...……………….. 9

V. Conclusion……………………………………………………………………………... 9

VI. References……………………………………………………………………………… 11
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Introduction

Autism Spectrum Disorder Influences Family Dynamics

The Center for Disease Control and Prevention (CDC) states that 1 in 68 children were

diagnosed with autism in 2012. This number is steadily increasing, but it is unclear whether this

is due to the increase in interest and focus on the disorder that has led to more specific tests to

diagnosis Autism Spectrum Disorder (ASD), as well as broaden the definition of what ASD

entails, or whether ASD is actually more common. Regardless of this debate, what is agreed

upon is that ASD is not currently diagnosed early enough, which is causing strains on family and

student-teacher dynamics. When undiagnosed children with ASD are held to the same standards

as children without ASD, a disservice is made to the child, and the adults are regularly frustrated

(CDC, 2017). To change this, children should be regularly screened for developmental delays

and disabilities in their first three years of life by their physician, and adults should be more

educated on what signs to look for in their children and students (CDC, 2017).

While everyone’s diagnosis is different, children and adults on the autism spectrum

struggle with social, emotional, and communication skills. The largest issues families with a

child with an ASD diagnosis deal with is a lack of resources and knowledge on the disorder, and

this in turn leads to an increase in maltreatment. The likelihood of receiving an ASD diagnosis is

being associated with environmental factors, so adults should be taught that abuse before

pregnancy can impact the health of future offspring, as well as indicators of ASD so they can

monitor their toddlers for those signs during their development (Sundquist & Sundquist, 2014).

Upon receiving an ASD diagnosis, the families should immediately receive early interventions to

understand their child’s disorder, and how to cope with it (Dieleman, 2018). Additionally, males

are 4.5 times more likely to be diagnosed with ASD, and this is highlighted in the lack of
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research on females on the autism spectrum (CDC, 2017). The gaps in literature for why males

dominate the autism population, as well as how autism affects females differently, should be

addressed in future research.

In an analysis of Autism Spectrum Disorder and family dynamics, we will present

findings from published studies and literature to discuss the general lack of coping skills and

resources for people and families living with ASD, the major concerns for maltreatment in

families with a child who has ASD, and the male gender dominance over the ASD diagnosis’

and research. We will then explain the relevance of the Bowenian model, and conclude with

successes in policy, and the main points of our research.

Lack of Resources for Families Living with Autism Spectrum Disorder

In reading through the literature there is an apparent lack of resources for individuals

diagnosed with ASD, their families, and the ASD community in regards to education, and

general awareness, support, and research for ASD.

While sex can be a taboo subject, it is vital for all young adults to be educated on the

topic of consent, including young adults with ASD. People with ASD have social and emotional

challenges, and when these needs are not addressed in combination with not being educated on

safe sex practices, people get hurt. More will follow on this in the maltreatment section, but

essentially there is a large need for children with ASD to learn about consent in a format that is

appropriate to the needs of their disorder.

Additionally, families taking care of children with an ASD diagnosis are not being

adequately educated on the needs of their child, and this is leading to more severe ASD

symptoms. It is vital for parents to be fluent in Autism Spectrum Disorder when they are raising

a child with the diagnosis because it is a developmental disorder where the symptoms can be
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minimalized with learned coping behaviors. The parents need to be well informed on how to

raise their child, what behaviors to be patient on, as well as what behaviors they should not

excuse. Just as it is important to be sensitive to needs, it is also important to not be too lax.

Appropriately pushing for progress allows for people to live out their best life.

ASD can be diagnosed as early as age two, but due to a lack of professionals working

with children knowledgeable on the signs of ASD, it is not being diagnosed until much later

(CDC, 2018). This is negatively impacting families living with ASD because a delay in

identifying a problem is causing a delay and understanding developmental needs, as well as a

delay in receiving treatment. Social learning therapy helps offset delays in socialization of the

child, and the earlier a child received treatment the more effective the results are (Berg, Shiu,

Acharya, Stolbach, & Msall, 2016). When parents find out late that their child has ASD they

tend to feel guilty for not knowing something was wrong earlier, and they rationalize that their

child’s disorder is more severe because it has gone unaddressed for so long. They blame

themselves for the severity of their child’s symptoms, and feel guilty for previous harsh reactions

to what they now understand to be delays in development and not disobedience (Derguy, Bailara,

Michel, Roux, Bouvard, 2016). A delay in diagnosis negatively affects every member of the

family.

This parental stress and neglect could be avoided if more professionals working with

children were adequately educated on the signs of ASD. Also, research states that if more of the

public was aware of ASD and what to expect, then families could be more accepting and less

stressed when receiving an ASD diagnosis (Derguy et al., 2016).

Furthermore, there is a huge need for ASD support groups. Mandell and Salzer (2007),

researched 2200 families living with ASD and found that 35% struggled to secure the medical
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services they needed. This is twice as high as families of children with other healthcare needs,

and it is believed that one of the factors contributing to this difference is that other disorders have

established support groups to provide families with social and emotional support, as well as

resources on where to find quality information, and what programs work best. The internet can

be overwhelming, and talking though possibilities with friends who have made similar decisions

is comforting and helpful.

Maltreatment in Families with a child who has an ASD diagnosis

A second overwhelming theme in the literature is maltreatment in families who have a

child with an ASD diagnosis. The literature shows a never ending cycle of mental, physical, and

sexual abuse. More and more research is showing the influence of environmental factors

affecting the development of ASD, and not just genetics.

For example, later diagnosis’ cause stress on caregivers because they are expecting their

child to develop at a rate similar to their peers, or in cases of veteran parents, earlier children.

When their undiagnosed child fails to meet developmental expectations the caregivers get

frustrated which increases the likelihood of physical abuse (Derguy et al., 2016). Additionally,

the more stress a child is under the more at risk they are for a severe diagnosis on the autism

spectrum. The cycle of stress from parent to child, then child to parent is negative for the whole

family unit, and ultimately this may have been prevented if more resources were available earlier

in the child’s life.

When it comes to adverse childhood experiences (ACEs), children with ASD are

significantly more likely than a child without ASD to have one to three ACEs (Berg et al, 2016)

for multiple reasons. Firstly, it is more likely for a child with ASD to be neglected because their

caregivers do not understand or meet their specific needs, nor do they praise their children as
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regularly because their expectations exceed their child’s capabilities (Dieleman, De Pauw,

Soenens, Mabbe, Campbell, & Prinzie, 2018). Secondly, navigating the needs of a child with

ASD can be stressful for caretakers, and increased stress generally increases the likelihood for

physical abuse in every family setting. Thirdly, social skills are a weakness for children with

ASD, so making friends to compensate for their lack of support system at home is less likely,

while being misunderstood and bullied by peers and suffering further emotional trauma is more

probable (Shore, 2018).

The abused are likely to become abusers, and the fewer support systems in both main

aspects of a child’s life in combination with a lack of awareness for social norms and acceptable

sexual behaviors only further festers the abuse cycle. Research on the background of adolescent

sexual offenders is one example of this. In looking at 1,600 adolescent sexual offenders across

30 states, 41.5% were physically abused as children, 25.9% were neglected, and several were

thought to have undiagnosed developmental disabilities such as ASD (Walters et al., 2013).

In addition to the likelihood of children with ASD experiencing maltreatment and causing

maletreatment, there is also research to suggest that increased stress levels in women who are

pregnant, or become pregnant within two years of the highly stressful time period increases the

likelihood of having a child on the autism spectrum (Derguy et al., 2016). Whether a woman

goes through the hardship of natural disaster that destroys everything they own, or they undergo

a domestic violence situation, the trauma changes their DNA. Similarly, while it is generally

known that drinking while pregnant has serious consequences for the fetus, heavily abusing

alcohol within two years of becoming pregnant has the same effect (Sundquist & Sundquist,

2014). Ultimately additional studies exploring the mother’s health in relation to the likelihood of

ASD needs to be further researched, and more programs and education need to be available to
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the public on how women can escape abuse and obtain help for addictions to protect innocent

life.

The Majority of ASD Diagnoses are Male

The third major commonality found throughout research on ASD is that the population is

majority male. This is supported in both the CDCs statistics, as well as the sample sets of the

majority of research on ASD. In fact, very little is known about how ASD could potentially

impact females differently which leaves an already understudied population further alienated

because of their gender differences.

This also raises an interesting question about genetics and how genetics affect

society. Why are people who are diagnosed with ASD 4.5 times more likely to be male? What

factors contribute to ASD, and is there preventative care that can be administered to families

statistically more probable to have a child with ASD?

The large margin of difference between the number of males who have ASD and the

number of females who have ASD raises more questions than anything else, but it also draws

attention to how little is known about Autism Spectrum Disorder. While there is positive change

in ASD awareness, the disorder as a whole needs more funding to further research these

questions, as well as provide resources to families living with the disorder.

Relevant Theory

The Bowenian Family Systems Approach

The main premise of Bowenian’s theory is accepting that families experience

dysfunction. Bowenian’s theory is important for families living with ASD because this type of

therapy accounts for the health of the family as a whole. This theory also looks at the family’s

previous generations and identifies negative cycles to change the future. The family must
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differentiate from the past and recognize the new situation as something that can be changed.

The first steps are awareness, and understanding how the new ASD diagnosis with impact family

dynamics. The family must realize how things were, and what they will be. Secondly, the

family needs to differentiate from the past family history by separating negative thoughts and

feelings, and instead seeing each family member as the person they deserve to been seen as.

Once these steps are taken this leads to freedom from the past and a new positive family change.

Positive Aspects in National Policy for ASD

Even though there is a long way to go when it comes to education and knowledge in the

general public for Autism Spectrum Disorder, there have been many accomplishments since

1908 when autism was first used medically (Sole-Smith, 2017). In 1991, the federal government

added autism to the special education category, recognizing that children in public schools

should be offered special services to enhance their learning (Sole-Smith, 2017). Additionally,

the Children’s Health Act from 2000 and The Combating Autism Act from 2006 both fund

research and awareness for autism (National Conference of State Legislatures, 2016). One of the

latest and biggest achievements is the Diagnostic and Statistical Manual of Mental Disorders

volume 5, DSM-5, which added all subcategories of the condition into one umbrella diagnosis of

autism spectrum disorder. Asperger's syndrome is no longer considered a separate condition and

ASD is defined by two categories (Sole-Smith, 2017). Lastly, World Autism Awareness Day is

April 2 recognized around the globe by the United Nations in support of Autism.

Conclusion

A family receiving an autism diagnosis can be stressful. It can be tough to decide where

to start and where to find resources. The child has a new identity to discover, and the family has

to learn how to cope and function with this new diagnosis. In recent years, there has been a lot of
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research and progress for people and their families with ASD. However, more needs to be done

to help implement resources to decrease maletreatment and increase quality of life.

Our nation and the world has come a long way when it comes to accepting individuals

and their families with an Autism Spectrum Disorder diagnosis’. Hopefully it continues to make

an even more positive impact, and change the lives of individuals and families affected by

autism.
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References

Center for Disease Control and Prevention. (2017). Autism spectrum disorder. Retrieved from

https://www.cdc.gov/ncbddd/autism/index.html

Center for Disease Control and Prevention. (2018). Facts about ASD. Retrieved from

https://www.cdc.gov/ncbddd/autism/facts.html

Dieleman, L. M., De Pauw, S. S.W., Soenens, B., Mabbe, E., Campbell, R., & Prinzie, P. (2018)

Relations between problem behaviors, perceived symptom severity and parenting in adolescents

and emerging adults with ASD: The mediating role of parental psychological need frustration.

Research in Developmental Disabilities. 73. 21-30. https://doi.org/10.1016/j.ridd.2017.12.012

Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with

autism? Autism : The International Journal of Research and Practice, 11(2), 111–122.

http://doi.org/10.1177/1362361307077506

National Conference of State Legislatures. (2016). Autism. Retrieved from

http://www.ncsl.org/research/health/autism-policy-issues-overview.aspx

Shore, Stephen. (2018). Strengths and challenges. Retrieved from https://www.autismspeaks.org/family-

services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit/strengths-and-chall

Sole-Smith, V. (2017). The history of autism. Retrieved from

https://www.parents.com/health/autism/the-history-of-autism/

Sundquist, J., Sundquist, K., & Ji, J. (2014). Autism and attention-deficit/hyperactivity disorder among

individuals with a family history of alcohol use disorders. eLife, 3, e02917.

http://doi.org/10.7554/eLife.02917