Autism Spectrum Disorder – Parental Challenges

Autism spectrum disorder (ASD) is a complex condition related to the development of brain pertaining challenges that influences how a child recognizes and understand things. This condition impacts how a person communicates and socializes with others followed by repetitive behavioral patterns and limited interests. The term “spectrum” in ASD indicates the severity and extensiveness of its symptoms. Autism spectrum disorder is contemplated as lifetime disorder, however, the extent of disability in functioning differs among children with autism and no two children show same symptoms. Currently, ASD is the fastest growing developmental disability in US.

Evaluation of ASD

The ASD begins in early childhood and many times children’s manifest symptoms of autism by the age of 1 year before the age of 3 and consequently, causes personal, social and societal challenges characterized by non-verbal communication, repetitive behavior and interpersonal skills. While there is no blood test or medical screening that can detect the symptoms of autism disorder in a child however, pediatricians examine the developmental stages and behavioral patterns to make a diagnosis. Parents fill-out the questionnaires that helps the clinicians to evaluate the fine motor skills, self-help skills and sensory-motor difficulties of a child.

Currently, there is no permanent cure for ASD but early management can bring about a big difference in day-to-day functioning’s of many autistic children.

Raising an Autistic Child and Parental Challenges

Approximately, 2% which is 1 in every 54 children in the United States are diagnosed with autism spectrum disorder every year. Parents of autistic children face their own test, trials and challenges. It takes time to develop patience and cope with the frustration and fears they experience while training their child with necessary skills and nurturing their personality. Below are three unique challenge that parents may experience in their journey.

1. Mental health

Caring of an autistic child is a full-time duty for many parents as every child is unique. Many times, there is a lack of social support and parents struggle to create a balance between their work and family life that often creates limitations in their personal interests and social life thereby elevating a caregiver/parent’s stress level. Some studies reveal that parents are unlikely to reach out for social support when children demonstrate more difficult behaviors. According to an interview survey conducted by Ryan with 46 families on “surveillance and managing emotions; going out with children with autism” disclosed that parents of autistic children feel reluctance to enter public places and struggle to find social approval.

Parents of autistic children often experience higher levels of distress. Approximately, 50% of mothers with autistic children are diagnosed with clinical depression in US every year and symptoms of anxiety has been determined among 41% parents of autistic children.

2. Finances

Unfortunately, present financial system is uneven for many families around the United States. Many parents experience more burden with regards to their budget to raise an autistic child due to the steep financial cost linked with the diagnosis and management of the disorder. While, there are limited government-funded programs available to support affected parents; the expenditures of many families are not reimbursable via medical insurance and/or publicly funded local and state-ran programs. Additionally, budgetary issues caused by personal transport to and from medical appointments, leaving a job or reducing work hours and other expenses associated with caring for child with exceptional needs exacerbate the financial pressure these parents experience. In 2012 study by Cidav & Mandell, it has been recognized that in US the income of parents with autistic children is 28% less as compared to the parents of non-autistic children.

3. Stigmatization/community access!

Stigma is a problem that not only any autistic child experiences but families of the children with disorder also confront with the issue. According to a study conducted by Inge-Marie Eigsti Ph.D. among parents of autistic children reported that parents continue to experience stereotypic and judgmental behaviors and they struggle through criticisms such as poor parenting skills, sluggishness and unavailable motivation and many other inappropriate comments such that negatively influences the autistic children and their families. One qualitative study conducted by Gray on “coping with autism: stresses and strategies” among parents of autistic children revealed that parents disengaged from social interactions due to stigma and stressful public encounters.

The US has adopted body of laws to enhance public awareness for introduction of autism spectrum disorder to promote fair and just treatment of special need children and families in the society. However, true inclusion continues to be an area on growth in many public domains.

References

Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster Inc. (1963)

Baio J. Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010.

MMWR CDC Surveill Summ. 2014; 63: 1-21

Bonis S. Stress and parents of children with autism: a review of literature. Issues Ment Health Nurs. 2016; 37: 153-163

Kinnear S.H. et al. J. Autism Developmental. Disorder. 46, 942-953 (2016) PubMed

Gray DE. Coping with autism: stresses and strategies. Sociol Health Illn. (1994) 16:275–300. doi: 10.1111/1467-9566.ep11348729

Ryan S. ‘Meltdowns', surveillance and managing emotions; going out with children with autism. Health Place. (2010) 16:868–75. doi: 10.1016/j.healthplace.2010.04.012

Cidav Z, Marcus SC, Mandell DS. Implications of childhood autism for parental employment and earnings. Pediatrics. 2012 Apr;129(4):617-23. doi: 10.1542/peds.2011-2700. Epub 2012 Mar 19. PMID: 22430453; PMCID: PMC3356150.