Coping Struggles for Families of Children with AutismPosted April 15, 2019 | By csponline
This article is from Volume 4, Issue 4 of Forensic Scholars Today, a quarterly publication featuring topics from the world of forensic mental health. Click to view or save a PDF of this article.
Coping can be tricky for family systems who have an identified person of autism spectrum disorder (ASD) living with them. There are many facets to the struggle, the main one being time to cultivate strong relationships with one another, due to limitations and needs of the individual with ASD. Parents have to conscientiously create time for one another and typically find difficulty procuring childcare who have experience with special needs children. Siblings learn to understand the child with ASD more fully over time, but this takes time to occur and depends on how soon the family received a diagnosis and could begin educating members of the family.
Families with siblings present prior to the birth and diagnosis of a child with ASD have particular patterns and family styles set. However, these patterns change significantly upon diagnosis of autism is rendered for one child (Altiere & von Kluge, 2009). As surely as the functioning of the family affects the child, the development of the child affects the functioning of the family. Typically developing siblings of the child with ASD have difficult roles within the family dynamics. In some families, the typically developing child feels responsibility to achieve all goals, absorb all negativity, and be a buffer or mediator between all individuals.
Marriages require work, communication, and understanding of one another to strengthen. However, a child with ASD needs more assistance than other children in the home, which can in return create difficulty in the family dynamics (Kyrkou, 2018; Neely, Amatea, Echevarria-Doan, & Tannen, 2012). The time the child with ASD requires can be viewed from one parent as negative. Feelings of jealousy may begin to emerge from the parent who is not sought after as frequently as the parent who the child with ASD is more inclined to request. The more highly sought-after parent may begin to feel resentment toward the parent who is perceived to not have to do as much for the child with ASD but is still pushing their mate for time, energy, and connection. Parents of a child with ASD report hardships in elevated stress and reduced opportunities for self-care and maintaining well-being (Meadan, Halle, & Ebata, 2010).
Being able to leave the home for social engagements can be difficult for the parents due to finding competent and trust worthy childcare. Equally, the parents of child with ASD are never exactly sure how their special needs child will acclimate to the environment if they choose to participate. Some children with ASD are non-verbal while others are verbal but unaware of their tone and volume level. Socially, not being aware of cueing systems of others and peers can create a hardship for all members of the family (Kelly, Garnett, Attwood, & Peterson, 2008). The family members who are able to recognize when others are not receiving the child with ASD well or are unsure what is causing their idiosyncrasies such as flapping, repetitive features, loud or odd tones, poor eye contact, and limited emotional reciprocity can create a hardship on all parties socially.
Finding a Babysitter
Finding a qualified individual to watch your greatest achievement in life, your children, is no easy feat. Now, add to the mix a child with disabilities, and a caregiver can feel overwhelmed in seeking help. Many families feel bound to their home with no outlet for self-care or positive connection within their marital relationship. Additionally, the typically developing siblings have activities they are part of which, at times, depending on the child with ASD, can be difficult to attend. Appropriate caregivers are necessary to help a family be able to take care of the other children as well as themselves while raising a child with ASD. The functionality of the family depends on the ability to find and keep a caregiver.
Going to Events
Many children with ASD struggle with dysregulation when noise, lights, and activity become overbearing. This can create a struggle for families at most events as they have to make decisions about where to attempt bringing the child with ASD and a plan of action if they are not able to cope properly while in attendance. Headphones can help reduce the noise transmission and sunglasses can help reduce the visual stimulation; however, the amount of activity is difficult to fully control. Therefore, families of children with ASD find themselves limited to functions that are special needs sensitive, which does not always allow the typically developing child the same opportunities for growth as other children. The family can feel pressure to support both entities, which are opposites in needs and best developmental practices.
Ideas for Coping
A helpful idea for parents of both ASD and typically developing children is to find outlets appropriate for the whole family. This may result in one parent taking the typically developing child to his or her events while the other parent stays in a more controlled environment with the child with ASD. Then, switch up who is the caregiver each time to allow both parents to have an outlet and meet their social needs. Looking on apps that provide special needs caregiving is another option for parents to have date nights. Limit the time away from the house to a couple of hours at first, and then work into longer periods of time. With increased familiarity with the babysitter, the child with ASD will become more willing to adapt to the changes of both parents being gone simultaneously. Lastly, do not give up on one another. Work to find time to reconnect. This type of parenting is difficult and requires you to regroup and recharge. Do not allow guilt to creep in and rob you of your joy.
Kristy Donaldson, Ph.D., LPC-S, RPT-S, CHST, owns Premier Neurofeedback & Counseling Services in Waco, Texas. Kristy earned a Bachelor of Science in Education in 2001 from Baylor University, Master of Education in Counseling Psychology with professional licensure tract in 2007, and her Doctor of Philosophy in Forensic Psychology from Walden University in 2017. Currently, Kristy is in post-doctoral supervision with NeCole Rivers, Ph.D., MOT, OTR, and she is fulfilling the requirements to hold practice as a licensed psychologist in the state of Texas with an anticipated licensure date of November 2019. Kristy is a licensed professional counselor supervisor, registered play therapist supervisor, and certified humanistic sand therapist. Kristy works with children, teens, and adults with a range of diagnoses, and she has extensive experience treating FASD, ASD, SPD, GAD, and ADHD. She uses a noninvasive, nonlinear neurofeedback to help clients of all ages remedy divergences in their brain. Additionally, Kristy is an animal-assisted counselor ambassador and brings her 3-year-old Great Pyrenees pup, Willow, to the clinic daily to work with individuals and families.
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Altiere, M. J., & von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18(1), 83-92. doi:http://dx.doi.org/10.1007/s10826-008-9209-y
Kelly, A. B., Garnett, M. S., Attwood, T., & Peterson, C. (2008). Autism spectrum symptomatology in children: The impact of family and peer relationships. Journal of Abnormal Child Psychology, 36(7), 1069-81. doi:http://dx.doi.org/10.1007/s10802-008-9234-8
Kyrkou, M. R. (2018). Health-related family quality of life when a child of young person has a disability. International Journal of Child, Youth & Family Studies, 9(4), 49. doi:http://dx.doi.org/10.18357/ijcyfs94201818640
Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7-36. Retrieved from https://search-proquest-com.ezp.mywaldenalumni.com/docview/749499598?accountid=134574
Neely, J., Amatea, E. S., Echevarria-Doan, S., & Tannen, T. (2012). Working with families living with autism: Potential contributions of marriage and family therapists. Journal of Marital and Family Therapy, 38, 211-26. Retrieved from https://search-proquest-com.ezp.mywaldenalumni.com/docview/1115574228?accountid=134574