The Other Side of the Spectrum: Awareness is the Future of Autism Treatment

A year and a half ago, I obtained an intern position, known as Behavior Technician, with Spectrum Analytic Consulting, a company that provides pediatric behavior health services to children and adolescents with developmental disabilities. Fast forward a couple of months, and I was certified, working fifteen-hour weeks with an eight-year-old with autism spectrum disorder, a developmental disability impairing social understanding, communication, and adaptive functioning (Papadopoulos, 2021). Now, as I am given the opportunity to use my career in Applied Behavior Analysis for academic credit, I am learning that my degree in psychology can be joined with my passion for working with children with autism spectrum disorder, or ASD, to do a greater amount of good in the community than I could have ever imagined.

The assignment for my Capstone Internship class asked a question - what is missing at my internship site and what can be done to change this? Fortunately, I have gained a multitude of experiences among several clients with varying levels of abilities, as well as with changing management and supervisors. While my expertise with the company and with providing services is convenient, I want to focus my project more on the autism community as a whole, rather than at my individual company. What stood out to me most while working in Applied Behavior Analysis, or ABA, is the lack of support provided for the people caring for those with autism. After a review of my semester’s work through journals and an analysis of previous psychological research, it is apparent that more support (that is, social support) for the caregivers of children with autism will greatly affect the treatment of autism spectrum disorder and similar developmental disabilities.

Parenting any child is difficult, but caring for a child who demands more supervision and more assistance can become extremely frustrating, especially without the presence of an educated and supportive community. I have observed through my work with various families that a caregiver’s position is vital to their child’s treatment and potential. My goal with this project is to bring a community together for families who may not have the support needed to thrive. This must be done by getting the word out and incorporating everyone - the individuals, their families, and their communities. I plan to start spreading the news with a website that incorporates my written experiences and research by sharing with those I interact with directly at my worksite and branching out to more of the community. By supporting and understanding the individual with autism, providing mental health and financial support for the families, and educating the surrounding community about ASD diagnosis and treatment, it is likely that we will begin to see individuals with developmental disabilities thriving and growing in their capabilities.

Research

Urion Bronfenbrenner's ecological systems theory provides a complex model depicting how a child interacts with his or her world, each system impacting child development. What Bronfenbrenner’s theory suggests is crucial to the treatment of autism, and yet little research and intervention in regard to the field has been completed. It proposes that each interaction within these ecological systems plays a vital role in child development, and that many of these interactions are bi-directional, meaning that how the children interact with the people in their environments directly affects how those will treat them in return (Bronfenbrenner, 1979). The model begins with the individual and grows outward as a child develops. Next in the model is interactions with immediate family, then with friends, teachers at school, and so on.

What is seen with children with ASD, though, is that their disabilities often hinder them from reaching or connecting with systems outside of their direct families. When placed in an often-unchanging environment, restricted from interaction to the outside world that is critical for a child’s development, growth can be harder to achieve and reactions to new situations are likely to be more difficult for everyone involved. Unfortunately, many negative symptoms come out of this specific situation, both for the family and for the individual. Resistance to change, maternal depression, and learned helplessness are a few examples, and provided with the following research, it will become apparent that these symptoms directly impact each other.

An observational study in 2019 surveyed 180 mothers of children with ASD to discover the role of their child’s symptoms on their own emotional problems. In an article by Zhao et. Al, researchers found that autism symptoms were strongly associated with maternal anxiety and depression, with approximately 45% of mothers presenting with clinical anxiety and 55% with clinical depression (2019). Another study by the University of California San Fransisco observed 50% of a sample size of mothers presented with clinical depression over a span of eighteen months (Ventola et. Al, 2017). When looking at the role that a parent plays in a child’s well-being, a similar correlation is observed. Jeffrey S. Karst and Amy Vaughan Van Hecke suggest that parental effects such as mental and physical health, financial strain, or overall stress can contribute to the declining efficacy of the treatment of autism (2012). The two researchers further state that parent and family effects “reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention,” indicating that the parents' and the child’s well-being directly impact each other.

Unfortunately, parents’ ill-being can present in a multitude of ways to affect the child with autism, such as anger, impatience, resentment, and guilt. In the year 2000, a Nebraska study found that 31% of disabled children experienced some sort of maltreatment, compared to 9% in children without disabilities (Sullivan & Knutson, 2000). The alarming rate of abuse that is over thrice the amount of a child with normal development can lead to further hindrance in treatment success. Not to mention, it has been found by Albert Bandura, creator of the social learning theory, that children learn by observing and modeling. According to Bandura’s 1977 study, children who observed an adult acting aggressively towards an inflatable doll later exhibited those same behaviors, also introducing new aggressive behaviors on their own, both towards the doll and with later toy play (Bandura, 1977). Observing the acting out of anger by parents can be passed down to children and present through injurious behaviors. In fact, self-injurious behaviors are already present in up to 77% of individuals with autism, and aggression toward others has risen to 20% in recent years (Fitzpatrick et. Al, 2016).

Another factor equally preventing treatment success is impatience. Life is crazy, and balancing several weekly, even daily, therapy and doctor appointments can be difficult. Children with autism tend to be slower to learn, requiring more prompting and more trials. In the midst of a crazy world, activities are often completed for them by others in the family. These adaptive skills include dressing and tying shoes, using the bathroom, and brushing teeth, all activities that will be necessary for independent completion later in life. When independent skills are completed by others, future learning may be harder or even impossible to achieve. The child may begin to develop an external locus of control, truly believing that he or she cannot do certain tasks on their own and simply give up.

The impending social stigma towards ASD is another factor that greatly affects both parents and children alike. Autism stigma can be observed in a social setting by discrimination or rejection, but also internally, presenting through shame, fear, and guilt in individuals with the diagnosis. Parents are also known to suffer from ‘affiliate stigma,’ shame or rejection by association, a lack of social support that has been found by researchers to be a major indicator in the development of mental illness (Boyd, 2002). Parents play a vital role in their child’s treatment, acting as key informants and advocates. If feelings of shame are to impact what a parent shares with other parents or doctors, this keeps them from receiving appropriate guidance, support, and treatment. Having a sense of community has been proven to improve mental health that results from the previously listed examples. Simply helping others in times of need is also beneficial (Bowe et. Al, 2021). Therefore, something must be done.

Application

With increasing research, it is becoming apparent that a reform is necessary for the treatment of autism spectrum disorder, one that holds the community at its very center. A writer for the National Alliance on Mental Health put it this way; “Community is critical for us to thrive,” agreeing with famous figures in the research of social psychology (Gilbert, 2019). How we as the community respond to this need is crucial, and again, begins with knowledge.

I was shocked when my professor in Child Psychopathology released the class early on the day that we were supposed to discuss autism spectrum disorders due to the fact that “we probably already knew enough.” This was a big assumption to make, one that I have observed to be wrong as evidenced by the questions I am asked about my job and the looks I get when I am out in public with my clients. I, for one, had little knowledge about neurodevelopmental disorders prior to my work in the field of ABA, and I can imagine it is the same for others who are not directly exposed.

How can we as a community advocate for those in need if we are not even aware of the core symptoms and needs of those with the diagnosis and those who provide caregiving? How can we care for and support these families when we do not understand what they are going for? Similarly, parents must be knowledgeable about the ins and outs of their child’s diagnoses, which directly affects how they care for their child, how involved they are in therapies, and how they allow their child to be in the world. They should have a community partially consisting of other families that share similar experiences. This way they feel comfortable sharing and understand that others go through similar, difficult, but worthy experiences. Parents should be aware of the risks of keeping vital information from doctors and therapists. They can learn from other’s mistakes. Having a community will provide a sense of understanding and belonging, improve mental health and further improve treatment.

A website (this one right here!) that provides the information that families and surrounding communities desperately need to understand about the child with autism is likely to be a great first step. This determines how the child and families are interacted with. The website will also encourage these families and communities to come together and find that sense of belonging that is required for more successful treatment. As I begin to share my website of journals, research, and encouragement with families, friends, families of clients, and people at my company, it is expected that we will begin to see major changes in how we treat children with autism spectrum disorder.

Conclusion

While some future limitations are present, the options for future research are plentiful. Future limitations may include dual relationships, in which boundaries should be clearly defined when finding a community to become involved with. Future research could include filling in the gap of research regarding parental involvement in ABA, and then applying that knowledge to build communities for the family caring for an autistic child.

The issue with parental effects on autism treatment is evident in current research and personal experience within the treatment of autism spectrum disorder. Lack of education and resources for parents, self-isolation and depression due to stigmas, and an overall lack of support for families are due to minimal access to a community. These traits further affect how a child feels, behaves, and responds to treatment. A community that incorporates the inclusion of families with ASD must be created to see parents, then children, flourish.

References

Bandura, A., & Walters, R. H. (1977). Social learning theory (Vol. 1). Prentice Hall: Englewood cliffs.

Bowe, M., Wakefield, J. R., Kellezi, B., Stevenson, C., McNamara, N., Jones, B. A., Sumich, A., & Heym, N. (2021). The mental health benefits of community helping during crisis: Coordinated helping, community identification and sense of unity during the covid ‐19 pandemic. Journal of Community & Applied Social Psychology, 32(3), 521–535. https://doi.org/10.1002/casp.2520

Boyd, B.A. (2002). Examining the Relationship Between Stress and Lack of Social Support in Mothers of Children With Autism. Focus Autism Other Dev. Disabil. 2002;17:208–215. doi: 10.1177/10883576020170040301.

Bronfenbrenner, U. (1979). The ecology of human development. Harvard University Press.

Burrell, T. L., & Borrego, J., Jr. (2012). Parents' involvement in ASD treatment: What is their role? Cognitive and Behavioral Practice, 19(3), 423- 432. https://doi.org/10.1016/j.cbpra.2011.04.003

Fitzpatrick, S. E., Srivorakiat, L., Wink, L. K., Pedapati, E. V., & Erickson, C. A. (2016). Aggression in autism spectrum disorder: presentation and treatment options. Neuropsychiatric disease and treatment, 12, 1525–1538. https://doi.org/10.2147/NDT.S84585

Gilbert, S. (2019). The importance of community and Mental Health. National Alliance for Mental Illness. https://nami.org/Blogs/NAMI-Blog/November-2019/The-Importance-of-Community-and-Mental-Health

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical child and family psychology review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6

Papadopoulos, D. (2021). Mothers' Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. Brain sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309

Sullivan, P., & Knutson, J.F. (2000) Maltreatment and disabilities: a population-based epidemiological study, Child Abuse & Neglect, 24(10), 1257-1273. https://doi.org/10.1016/S0145-2134(00)00190-3.

Ventola, P., Lei, J., Paisley, C., Lebowitz, E., & Silverman, W. (2017). Parenting a Child with ASD: Comparison of Parenting Style Between ASD, Anxiety, and Typical Development. Journal of autism and developmental disorders, 47(9), 2873–2884. https://doi.org/10.1007/s10803-017-3210-5

Zhou, Wensu MDa; Liu, Dan MPHb; Xiong, Xiyue PhDb; Xu, Huilan PhDa. (2019) Emotional problems in mothers of autistic children and their correlation with socioeconomic status and the children's core symptoms. Medicine 98(32):p e16794, August 2019. | DOI: 10.1097/MD.0000000000016794