Youth Autism Awareness

Military Youth Autism Awareness

By Amy Leeser

“Oh my! It’s raining cats and dogs out there!” A second-grade girl remarked as she stared out of a classroom window. Another child, wide eyed and twirling her braid, turned, stared in shock and disbelief at the raindrop scattered windowpane. “What do you mean, those poor puppies!?” she cried. “Nooooo….” scoffed another classmate, “There are NO ANIMALS. She means it’s raining REALLY HARD.” The concerned child, saddened about the well-being of the possible tumbling animals outside, slumped down in her chair, trying to avoid the gaze of everyone. Her eyes welled with tears and remained silent throughout the rest of the class. She continued to twirl her hair with more vigor. Soon the sun began to shine via the droplets on the windowpane, she stopped twirling her hair to stare at the beautiful array of light. “This is a prism, a spectrum of light.” She whispered to herself.

Children with Autism Spectrum Disorders have their own unique struggle. Like the spectrum of light, Autism diagnosis defines a broad range of conditions that demonstrate marked struggles with language (expressive/receptive), repetitive/restrictive behaviors, social skills, and nonverbal communication. This vignette of an interaction between three 8-year-old children provides an example of a receptive language issue. For this little girl, she struggled to understand an idiom likening the raindrops to “cats and dogs falling from the sky.” Dr Stephen Shore has stated that “If you met one person with Autism, you have met one person with Autism.” He is an author, a professor of Education, and is a member of the board of Autism Speaks, an organization created to educate and advocate for those affected by Autism throughout their lifespan. His quote incites awareness that while a child may be diagnosed with autism, their presentation and needs will be unique. (APA, 2013)

Autism Speaks shares statistics and trends that have shown a steady increase in diagnosis of autism spectrum disorders (ASD). Diagnosis has become more comprehensive in recent years. Awareness and early detection have been associated with an increase in the frequency of diagnosis. The Centers for Disease Control (CDC) reported in 2021 that 1 in 44 children were diagnosed with autism spectrum disorder in the United States. Autism affects children across all socioeconomic statuses and minority groups. Minority groups are diagnosed at a later age and at a lesser frequency than other demographic groups. Families face multiple challenges after diagnosis. These include parents having difficulty maintaining ‘out of the home’ employment while becoming full-time advocates for their children. The additional cost of providing treatment and care per child with ASD is approximately $60,000 per year (Autism Speaks, 2017).

Risk Factors of Military Children with Autism

While 1 in 44 children in the general population are reported to be diagnosed with Autism, the statistics are not entirely clear for military children. In 2020, TRICARE reported at across all branches of service, 34,361 military children were diagnosed with an autism spectrum disorder, with about 60% being children of active duty Service members. It is suspected that these numbers are underreported (Klin et al., 2015). Military children with Autism and their families face unique stressors and struggles compared to their civilian counterparts. Military families must secure a treatment provider and participate in the process of testing, diagnosis, treatment, and educational support while remaining mission focused.  Stress is escalated with uncertainties about deployment, war, and geographic separation from their support systems in permanent changes of duty station (PCS) (OAR, 2019).

Case Study/Expertise

Although there have been many systemic improvements in services for military children, there are still barriers that exist due to the high mobility nature of military life. Most military families move every 2-4 years, requiring parents to establish new care providers for their children once they arrive at their new location. For children who require specialized care, it is even more daunting. After months for treatment in their current duty station, they are required to “go back to the end of the line” once they locate a new service provider. High levels of frustration were also reported due to a lack of satisfaction in the quality of the care their child receives at their new provider. Families not only are geographically isolated from their previous providers, but military parents who have children with autism reported higher levels of stress and social isolation across qualitative research after relocation and during separation (Klin, et al, 2015).

Deployment cycles lead to increased behavioral and emotional issues for military children. Parents have reported that once their child’s problematic behaviors have stabilized after their parent has deployed, their behaviors may increase once again once the parent returns from deployment.  Children exhibit increased emotional withdrawal, and repetitive behaviors when their Service member parent is deployed. It has been reported that the parent left behind to manage the care of the entire household can experience feelings of guilt and worry about providing adequate parenting alone (Davis and Finke, 2015).

Permanent Change in Duty Station (PCS) also takes a unique toll on the military child with autism. Friendship and social interaction are protective factors and good for overall mental health. Military children move frequently and must make new friends at their new hometown and school. Autistic children innately struggle with making social connections, which makes it particularly harder for them to establish new positive social connections with peers. Autistic children were reported to be lonelier and more withdrawn after relocating to their new location (Davis and Finke, 2015).

Magellan Federal Best Practices

Magellan Federal Military & Family Life Counselors (MFLCs) as mission partners, can become the help multiplier for these special families. MFLCs may serve as referral linkages, connecting families to the life-changing services locally or at their next duty station prior to their move. MFLCs may create an Autism Resource Connect (ARC)—a smooth connection to autism resources for military families from one base to the next. This proposed program component can partner with base resources to maintain an updated roster of local providers to ensure that before, during, and after the process of permanent changes of duty station (PCS), families can ensure a comprehensive and smooth transition to local supports.  Utilizing the current Military Family Life Counseling network of counselors, resource lists can be maintained locally and are available to share with their counterparts at other installations.

Although MFLCs do not provide direct support for the child diagnosed with autism, their families may benefit from the non-medical counseling support. MFLCs can provide support through individual, marriage, and family counseling. MFLCs can also connect with local Exceptional Family Members Programs (EFMPs) to provide MFLC briefings/presentations to families currently within the program advising of support that can be provided to the family unit. Although the child with exceptional needs is out of MFLC program scope, the parents and siblings are not.

Another gap that appears to exist in care for these military families, is the support of the siblings of the children with autism. School MFLCs have particularly great advantages in identifying and serving these unique children. Siblings of children with autism, particularly older siblings, tend to externalize stress and frustration through negative behaviors. MFLCs situated in middle schools and high schools may be instrumental in providing support for these children. These siblings empirically have shown higher tendencies of experiencing of loneliness, academic struggle, and aggression (Walton & Ingersoll, 2015).  MFLCs can create spaces of peer support in the groups.

In April we celebrate Month of the Military Child. We wear purple in support and solidarity-creating awareness of the unique challenges of the military child. Military children and families affected by autism experience these challenges compounded by navigating life’s daily, routine challenges. While awareness is wonderful, awareness is the first step. Magellan Federal supports children diagnosed with an autism spectrum disorder and their families by bridging gaps in support and care. Specifically, MFLCs provide briefings and psychoeducation regarding available services to supportive base programs. Autism is a life-long disability. With support, each and every individual can reach their potential. The outcomes for children are exponentially better with early diagnosis and intervention. MFLCs can make a difference. One Team. One Mission.

Resources

• OAR. A Guide for Military Families(2019) https://operationautism.org/wp-content/uploads/2019/12/A_Guide_for_Military_Families.pdf
• Autism Speaks www.autismspeaks.org
• Exceptional Family Member Program https://www.militaryonesource.mil/special-needs/efmp/

References

• American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
• Autism Speaks(2019). Autism and Health Report https://www.autismspeaks.org/sites/default/files/2018-09/autism-and-health-report.pdfb
• Davis, J., & Finke, E. (2015). The Experience of Military Families with Children with Autism Spectrum Disorders During Relocation and Separation. Journal of Autism and Developmental Disorders, 45(7), 2019-2034.
• Klin A, Wetherby AM, Woods J, Saulnier C, Stapel-Wax J, Klaiman C, Jones W, Rubin E, Scahill L, Call N, Bearss K, Gunter C, Courtemanche CJ, Lemieux A, Cox JC, Mandell DS, Van Decar JP, Miller RA, Shireman CL. Toward innovative, cost-effective, and systemic solutions to improve outcomes and well-being of military families affected by autism spectrum disorder. Yale J Biol Med. 2015 Mar 4;88(1):73-9. PMID: 25745376; PMCID: PMC4345541.
• OAR. A Guide for Military Families(2019) https://operationautism.org/wp-content/uploads/2019/12/A_Guide_for_Military_Families.pdf
• Walton, K.M &Ingersoll, B.R. (2015) Psychosocial Adjustment and Sibling Relationships in Siblings of Children with Autism Spectrum Disorder: Risk and Protector Factors.