Youth Autism Support for Military Families

By Lynette Wishart (MA, LCMFT, CISM, CASDCS)

A certain amount of ambiguity surrounds the term autism and often suggests a stereotypical image; but autism affects individuals uniquely. Over the years, professional theories about autism and other childhood disorders shifted to try to better capture what is now known as Autism Spectrum Disorders (ASD). Causes and treatments continue to be put forth to capture pieces of the mysterious puzzle. Though commonalities persist, each person with ASD experiences a unique level of impact on skills, intelligence, and capability and even characteristics of siblings with ASD can vary widely. A few unique thinkers and accomplished artists that fall into this population are Albert Einstein, Thomas Edison, Emily Dickinson, Sir Isaac Newton, Beethoven, Mozart, de Vinci, Anthony Hopkins, and Jerry Seinfeld.

Early Warning Signs

Currently, one in forty-four children are diagnosed with ASD, with over 1 million reported to be in active-duty military families, according to 2021 CDC data (7) and Operation Autism (11). The American Autism Association offers some early signs and symptoms to be aware of for the parents raising young children. (1):

Communication

• Delays in language development.
• Quirky repetitive language or sounds.
• Inability to initiate or maintain speech.
• Responds by repeating a question, rather than answering it.
• Difficulty communicating needs or desires.

Social Interactions

• Lack of appropriate verbal and nonverbal behavior.
• Lack of ability to develop peer friendships.
• Social and emotional exchange challenges, including maintaining eye contract.
• Minimal tolerance to being touched, held, or cuddled.
• Trouble perceiving or talking about feelings.
• Trouble sharing interests or successes with others (art, playthings).

Patterns of Behavior

• Restricted, repetitive and stereotyped behaviors.
• Difficulty in motor control
• Peculiar connection to objects.
• Distress with change in routine.
• Lining up toys.
• Head banging or rocking back and forth.

Looking Closer

Concerned parents are encouraged to speak to their child’s medical provider. Most communities offer free screenings to assess developmental progress and check for school readiness. The earlier an ASD screening occurs, the better, as this is the first step toward diagnoses which leads to important early interventions. Siblings of children with ASD screened, since ASD can present families. Military treatment facilities can assist through Educational and Developmental Intervention Services (EDIS). Once a screening determines risk factors and signs of ASD, a formal diagnostic evaluation is conducted to identify areas that may be addressed in treatment, such as challenges in social communication, behaviors, sensory issues, and the level of impact on daily functioning is assessed. (1)

Children on the autism disorder spectrum experience a unique combination of impacts on brain functions (i.e., thinking, memory) that may reflect some strong skills in one functioning area and low abilities in other areas. For example, a strong math aptitude may be coupled with a slow processing speed that appears as laziness to observers. Social issues may surface as peer conflict and loss of friends due to errors in interpreting social cues and sensory discomfort felt when looking others in the eye. A perceived lack of empathy may result from a child experiencing intense feelings of empathy, but not knowing how to identify or act on them, and then responding inappropriately. Inadequate verbal skills and meltdowns may occur when emotional or sensory stimulation floods the child, maxing their coping skills (as with loud noises or unexpected changes).

Easily knocked out of balance, these children struggle to identify and communicate their needs. Sensory sensitivity, such as the feel or fit of clothing fabric, food texture or taste, odors, certain sounds, temperature variations, and light levels can flood the brain at unbearable levels. Food refusals can make it difficult for them to receive adequate nutrition, complicating healthy development. Nearly half will run or wander off without warning and many struggle with physical tasks like writing or riding a bike. With 40% of ASD children lacking verbal skills, it can be stressful for both caregivers and child to understand each other despite access to communication assistance devices. (4)

Diving Deep

The five major types of disorders falling under the ASD umbrella are Asperger’s, Rett’s, Kanner’s syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder. It is very common to see other disorders accompanying ASD like Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, and Dysgraphia which can complicate the individual’s learning processes. Other concerns affecting this population in higher numbers are bullying, self-injurious behavior, anxiety, depression, schizophrenia, various health issues and physical disabilities.

Boys are four times more likely to be diagnosed with ASD than girls. (7) Professional theories have asserted that girls may be more likely to compensate by masking their symptoms resulting in a missed diagnosis or being misdiagnosed. (11). Girls may have subtle symptoms or higher functioning and do not always exhibit characteristics according to traditional ASD testing markers.

High functioning autism, (Asperger’s, ‘Aspie’), is seen in individuals with high levels of intelligence in some areas and deficits in others. The terms ‘camouflaging’ or ‘masking’ refer to sophisticated compensation skills where one notices, studies, and mimics the social skills of others, to compensate for natural tendencies. This can trigger remarks about them being too outgoing to have autism and undermine their self-awareness and identity. (5) ‘The invisible edge’ coined by Autism specialist Tony Attwood, describes these persons as flying under the radar resulting in either a late diagnosis or a missed diagnosis. (2) Delays in confirming the diagnosis symptoms hinder crucial access to early services and lead to the child facing expectations outside their abilities.

Compassionate Responding

Caring for a child with ASD can be quite physically and emotionally exhausting. Finding support can make a big difference. When a parent is stressed, it can be hard to be their best self for their special needs child and the rest of the family. Self-care for the caregiver is a necessary survival skill. Military installations offer respite care to help the caregivers and some states will offer pay for respite caregivers.

Emotional outbursts are common for children with ASD and challenging for parents to handle. It is helpful if the caregiver remains calm and models good coping skills from which the child can then draw to self-soothe. Using a distraction or special interest of the child (reading or playing with cars) can help calm the child. Raising voices and increasing tension can inadvertently prolong periods of challenging behaviors. Attuning regularly to the nuances of the child offers a parent greater ability to notice and appropriately respond to symptom escalation.

The American Autism Association identifies common interventions to include speech and language therapy; occupational therapy to address motor skills, sensory issues, and functional living; play therapy and floor time to aid in emotional and cognitive development; and social skills/ communication therapy to assist with socialization and emotional management. (1) Building a team of professionals around the child supports growth. It is vital to keep in mind that individuals with ASD can be quite gifted in areas of aptitude, enjoy life, and lead productive careers.

Military Families

Military lifestyle challenges are already difficult for the average family but for the family dealing with autism, essential care can be complicated. The process of confirming an ASD diagnosis can take up to 18 months to complete due to long wait times for testing. For the military family, duties, and permanent changes of station (PCS) moves can not only complicate this timeline but also delay the feedback process from providers and teachers who may have less opportunity to consistently observe and work with a child. Additionally, remote installations may not be able to offer access to all the necessary services, making participation in the Exceptional Family Member Program (EFMP), a significant benefit to the military child, less feasible. Operation Autism offers an in-depth resource Guide for Military Families and an interactive geographical map of resources. ⁽¹¹⁾

Many ASD symptoms can be intensified by stress and frequent changes that come with the military lifestyle as these children benefit most from a predictable routine and steady environment. Frequent relocations, changing homes, schools/ teachers, and making new friends, are especially difficult for children on the spectrum. With social skills already elusive, the ASD child may find these changes unbearable. Frequent social rejections and bullying can further frustrate attempts at making even a single real friend. Higher stress can lead to more health issues with these children who do not read their body cues well and even a loss of previously gained skills.

Magellan Federal Solutions

Magellan Federal provides counselors for many programs like the Military Family Life Counseling Program (MFLC) located on many installations within the US and overseas. The MFLC program is available to service members and their families for non-medical support. Although the medical nature of the ASD diagnosis causes the child to be out of scope for direct MFLC services, family members can be supported with counseling, resources, and referrals. The MFLC program offers a variety of including Healthy Steps Specialists working with parents of children 0-3 in pediatric clinics; Child and Youth Behavior Counselors working in the Child and Youth Program in CDCs/ school age services, and schools; and Adult MFLCs located in the family readiness centers. Other resources an MFLC might make referral to are Exceptional Family Member Program (EFMP), New Parent Support Program (NPSP), Tricare, and Military OneSource. Each of these assist parents with specific concerns related to their children.

EFMP is an installation-based program (offered by the Magellan Federal family in some locations) serving the military family with special needs members and is the best first stop for the family with a child newly diagnosed; offering support, resources, and information on assistance like respite care for parents. NPSP, also provided by Magellan Federal family at some locations, offers military families in home support to assist families with children under age five with visits by a nurse or social worker.

Regardless of when in the journey an ASD diagnosis is received, the military family does not have to travel the road alone. Magellan Federal is committed to providing support and guidance along the way.

Resources and Bibliography

1. American Autism Association: myautism.org, https://www.myautism.org/information-kits https://www.myautism.org/informational-kits/general-therapies-for-individuals-with-autism
2. Attwood, Tony. Asperger’s Syndrome: A Guide for Parents and Professionals. Jessica Kinglsey Publishers 1998.
3. Autism Society: https://autismsociety.org/
4. Autism Speaks: autismspeaks.org
5. Abilities Workshop: https://special.abilitiesworkshop.com/autism-resources?gclid=EAIaIQobChMIiPj53OG9_QIVGXxvBB3CQg1tEAAYASAAEgJgTPD_BwE
6. Bargiela, S., Steward, R. and Mandy, W. (2016) ‘The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders 46, 3281-3294
7. Center for Disease Control https://www.cdc.gov/ncbddd/autism/index.html
8. Exceptional Family Member Program (EFMP), an installation-based program offered by the Magellan Federal family in some locations, serving the military family with special needs children, including autism and is the best first stop for the family with a child newly diagnosed with ASD; offering support, resources, and information on assistance opportunities like respite care for parents.
9. Military OneSource offers a special needs consultant at 888-342-9647, articles and information. militaryonesource.mil
10. National Professional Development Center on Autism Spectrum Disorder. (NPDC). https://autismpdc.fpg.unc.edu/national-professional-development-center-autism-spectrumdisorder. Develops free professional resources for teachers, therapists, and technical assistance Focused Intervention Resources and Modules (AFIRM), a series of free online modules.
11. Operation Autism website offers a resource Guide for Military Families including an interactive geographic guide to local resources at https://operationautism.org/autism-101/causes-and-prevalence-rates/. https://operationautism.org/resources/bases-map/.
12. Organization for Autism Research (OAR). https://researchautism.org/ Non-profit organization responsible for creating Operation Autism and guide and offers free resources either as a digital download or hard copy.
13. Tricare offers special needs liaisons and autism specific resources and information including providers and programs like Echo and Autism Care Demonstration.
14. Extended Health Care Option (ECHO) supplemental benefit for Active Military families with special needs. More information provided through Tricare.org
15. Autism Care Demonstration. https://www.tricare.mil/Plans/SpecialPrograms/ACD