While recently giving a presentation on counseling clients with autism spectrum disorder (ASD), I had a more than professional concern: I am on the spectrum as well. Not that far along, true, but still on it, and if you were not to suspect this meeting me, it is only because a lifetime of learning to function successfully in the neurotypical world has borne fruit. As an autistic clinician, I offer these insights to help colleagues better understand and effectively support neuroalternate clients. (Note: “Neuroalternate” is a term I have personally coined and will be used in place of the clinical term “neurodivergent” for the purposes of this article.)

What is the Neuroalternative Experience?

The neuroalternate experience is like listening to someone who is not a native speaker of your language; while you may understand them, it takes extra effort. In contrast to a richly diverse and kinetic environment, what we prefer, long for, and even need is one that is straightforward, structured, predictable, and low in stimulation. Any deviation from this is unwelcome, stressful, and overloads our circuits. Social rituals and expectations appear strange and nonsensical, and the cues that accompany them are perplexing and inscrutable. There seems no good reason to pay attention to them (despite often getting us, obviously, into hot water).

Direct Communication: Clarity Over Social Rituals

From a neuroalternate perspective, communication the way we want it is direct and straightforward, even blunt. There’s no need for niceties. Just say what you mean, mean what you say, and get on with it. Keeping up with a group conversation is like keeping your eyes on each ant in a swarm of ants. Sarcasm, double meanings, plays on words, idioms, and colloquialisms can go over our heads. Thus, we can sometimes come across as painfully earnest in conversation. True, we don’t enjoy the misunderstandings resulting from all this, but it’s hard for us to see what to do about them. That’s where counseling comes in.

Key Considerations for Clinicians Working with Neuroalternate Clients

Drawing from my clinical experience and personal perspective as an autistic counselor, here are key insights for working with neuroalternate clients.

1. Don’t try to make them into someone they’re not and can’t be. By the time they get to us, most clients are already beaten up by years of expectations they cannot meet and have failed at, leaving them feeling excluded and often ashamed.
2. Remember that neuroalternates do have a need for human relationships. However, after repeated collisions with the neurotypical world, isolation becomes preferable to pain.
3. Accept that to the neuroalternate, relationships built purely on social interactions – hanging out, chatting, bantering – will likely be unrewarding. Likewise, acknowledge that acquiring an instinctive feel for social cues will not happen. It would be like trying to get someone who is color-blind to see color.
4. Use concepts from physical objects to engage. Neuroalternates are drawn to concrete things, so progress can be made on this basis. Think of signals or gauges; if we know what they mean, we can react even if we do not understand the processes behind them. Thus, identifying social cues and learning how to respond to them must be framed in terms of reading instruments that tell the operator to take specific actions. To a neurotypical, this may come across as mechanistic and off-putting; however, it is something the neuroalternate mind can embrace and work with.
5. Be quiet, calm, and patient, and let the client approach you. Buy-in – the alliance – is even more critical than with other clients, since change can feel especially threatening to the neuroalternate client’s sense of self. Reassure them that you will help them learn to cope with the world only as much as they need to yet still remain themselves.

In conclusion, think of a brick wall, with the neurotypical as the bricks and the neuroalternate the mortar. Stacking the bricks on top of one another would result in a wall that is easy to push over. Likewise, mortar by itself does not a wall make. But with mortar to hold the bricks in place, you get a strong and lasting wall. We need each other.

About the Author

James P. Bruner is the high school ASACS counselor in Vicenza, Italy. He has been with ASACS since 2001 and served at three sites in Germany prior to moving to Italy. He grew up in the Upper Ohio Valley and will eventually move with his wife to be with their family in Oklahoma. His interests are in anything that’s alive, any kind of machinery, and any kind of science – frankly, just about anything.

Autism Acceptance Month celebrates the unique strengths of individuals with autism spectrum disorder (ASD) while promoting understanding and support for their needs. ASD affects 1 in 36 children and an estimated five million adults in the U.S. Many face co-occurring mental and physical conditions, requiring holistic care to support their overall wellbeing.

Why acceptance matters

Acceptance creates opportunities and builds a sense of belonging. When individuals with autism are accepted and supported:

• Early intervention becomes possible. Diagnosing autism early enables access to therapies, such as Applied Behavior Analysis (ABA), that improve communication and social skills, promoting independence and meaningful connections.
• Barriers are broken down. Approximately 85% of adults with autism are unemployed or underemployed. Increased awareness and support can help overcome challenges in education, employment and healthcare, creating opportunities for inclusion and success.

Why co-occurring conditions matter

Co-occurring conditions often significantly impact the lives of individuals with ASD.

• Physical health conditions, such as gastrointestinal issues, epilepsy and sleep disorders, affect approximately 50 – 70% of children with ASD.
• Mental health conditions, like anxiety, depression and attention-deficit hyperactivity disorder (ADHD), impact up to 80% of adults with ASD.

Addressing these co-occurring conditions in tandem with ASD improves quality of life, strengthens relationships and promotes greater independence.

How you can make a difference

• Learn: Educate yourself about autism and co-occurring conditions.
• Advocate: Promote participation in schools, workplaces and communities.
• Amplify: Celebrate the strengths and perspectives of individuals with ASD.

Together, we can create a world that embraces neurodiversity, fosters acceptance and empowers individuals with ASD to thrive.

Visit MagellanHealthcare.com/Autism-Resources for more information and helpful resources.

Fostering inclusivity helps people to thrive in a diverse world. One vital aspect of inclusivity that often goes unnoticed is neurodiversity—the recognition and acceptance of neurological differences. By embracing neurodiversity, we can foster inclusive and thriving environments that celebrate unique minds and promote the success of all individuals. Here are some tips to support neurodiverse individuals.

1. Avoid sensory overload – Sensory overload can be a significant issue for neurodiverse individuals. This can include bright lights, loud noises and strong smells. Be mindful when engaging with neurodiverse individuals by suggesting quieter environments and reducing visual clutter.

2. Adapt your communication – To better accommodate neurodiverse individuals, vary your communication style. This may include:

• Avoiding using ambiguous or figurative language.
• Offering advance notice for any changes in plans or routines.
• Using visual aids, charts or diagrams to supplement verbal instructions and enhance understanding.

3. Foster empathy and understanding – Take time to learn about neurodiversity and the unique challenges faced by individuals with conditions such as autism, ADHD, dyslexia and others. Listen, learn and seek to understand the experiences and perspectives of neurodiverse individuals.

4. Be an advocate – Stand up for neurodiverse individuals by challenging stereotypes and misconceptions, advocating for their needs and celebrating their unique strengths. If you see or hear something potentially harmful or offensive, address it. Your support will not go unnoticed.

How can I learn more about neurodiversity?

Find more information and helpful resources at MagellanHealthcare.com/Autism-Resources, including online and tech-enabled resources to help neurodivergent individuals navigate daily life and empower parents, families and caregivers to support children on their journeys.

Sources:
• Forbes
• The Pink News

About 1 in 36 children in the U.S. has been diagnosed with autism spectrum disorder (ASD), according to the Center for Disease Control and Prevention.[1] Getting an ASD diagnosis is a life-changing event for families that can trigger feelings of panic, fear and distress. You may be uncertain or confused about what to do next and how to navigate your new reality. Here are nine tips to help you and ensure your child lives their best life.

1. Do your homework—Learn everything you can about ASD and how it may affect your child throughout their life, including the laws and rights that you and your child have under the Individuals with Disabilities Education Act. The knowledge you gain will help you be an effective advocate for your child.
2. Become a voice for your child—As a parent, you are your child’s first, strongest and lifelong advocate. No one knows your child better than you do. You are the best qualified person to shape your child’s situation in the most caring way and speak out when it comes to their well-being and ensuring that they have the supports they need to flourish.
3. Seek help—The autism community is full of parents and professionals willing to help others in their ASD journeys. Allowing others to help can lighten your load, help you become a better advocate and protector for your child, and make the sometimes difficult journey more enjoyable. Seek out support groups, teachers, therapists, social workers and others for help.
4. Give help when you can—If you can, helping other parents on their ASD journeys can help you to put things in perspective, feel more positive about your own circumstances and create a sense of belonging. Helping others has shown to lower levels of stress and anxiety, which improves overall well–being.
5. Express yourself—As human beings, we need connection. Sharing your feelings with someone you trust, such as your partner or spouse, parents and/or siblings, can be liberating and go a long way in deepening your relationships, and improving your physical and mental well-being, making you a better person, parent and family member.
6. Make self-care a priority—Spending most of your time caregiving can quickly lead to burnout. Proper hydration, a healthy diet and sufficient sleep can help you cope best with daily challenges. Finding time for activities that are fun and fulfilling, such as going to the gym, going for walks and meeting friends, can help you recharge and be the best parent you can be.
7. Find the right providers—While it is important that your child’s providers use evidence-based practices and keep abreast of treatment options, it is also important that they are culturally aware and respect your ideas and traditions. Each cultural group has its own customs, thoughts and taboos regarding physical and mental health care. Find a doctor who not only speaks your language, but is also sensitive to your cultural, religious and personal beliefs.
8. Foster healthy eating habits—Children with ASD often experience issues such as insomnia, eczema, constipation, diarrhea, behavioral outbursts and more. If your child has any of these issues, you might want to see if it is a reaction to foods that are not good for their system or if their intestines are out of balance. Healthy eating habits can make a big difference in the lives of children with ASD.
9. Nurture your child’s strengths—Children improve faster when they work on strengths. Focusing on your child’s strengths, not weaknesses, puts them on the path to their personal best, allows them to develop and excel in things they’re good at, and can greatly improve their self-esteem and well-being. It can also foster a better parent-child relationship.

Magellan Healthcare is committed to improving all lives affected by autism. Visit our Autism Acceptance website for:

• Free resources that increase awareness, celebrate differences and support inclusion.
• Online and tech-enabled resources to help children with autism navigate daily life and empower parents, families and caregivers to support them on their journeys.

Sources:

[1] https://www.cdc.gov/ncbddd/autism/data.html

As October comes to a close, so does the monthly observance known as National Disability Employment Awareness Month. This year’s theme selected by the Office of Disability Employment Policy was “Advancing Access and Equity.” According to the Autism Society, adults with Autism are represented in every field of employment.

In this Q&A article featuring Dr. Amy Latta, a psychologist advisor for Magellan Healthcare, we explore the question – is Autism a disability?  Dr. Latta shares her thoughts on this question below.

Q: Is autism considered a disability (from social, legal, and medical viewpoints)?

Dr. Latta: The medical and legal perspectives both view Autism as a disability. The disability is created when the individual’s impairments (social communication and social interaction, as well as restricted interests, behaviors, or activities) interfere with daily functioning.

In contrast, a social perspective views the individual with Autism as “neurodivergent”  or having a brain style that is simply different from the average or “neurotypical” person in society.  From this perspective, Autism is not a disability. The disability is created by society’s lack of acceptance of an individual with a different or “neurodivergent” brain style. Within this framework, as society becomes more inclusive of persons with Autism and adapts better to their needs, the disability fades.

Q: How do you discuss neurodivergence with a child with autism?

Dr. Latta: If you ask a group of children to draw a person enjoying something fun, do you think all the pictures will look the same? Would anyone’s drawing be the “right” drawing or the “wrong” drawing? That is neurodivergence. It means everyone’s brain functions differently. There is no right or wrong way.

Q: Please briefly outline state government disability benefits people with autism can take advantage of.

Dr. Latta: Social Security Administration’s (SSA) administers the Social Security Income (SSI) program, which provides financial assistance to children and adults with Autism. In order to meet eligibility for SSI, there are income limits and medical requirements (e.g., symptoms of Autism need to be severe enough).

Q: How does getting disability benefits differ for children and adults (especially for parents with teens about to turn 18 – do they need to go through the process of conservatorship before the 18th birthday or will their child need to show financial responsibility, such as a job or paying rent, to get the full amount of disability)?

Dr. Latta: A child (under age 18) with Autism may qualify for Social Security Income (SSI) if the symptoms of Autism are severe enough and the parents’ income does not exceed the income limit. The income limit increases with each additional child under age 18 in the family.

Once a child with Autism turns 18, the parents’ income is no longer counted (even if the child is living at home) in the calculation for SSI benefits.

If a child is going to turn 18 and needs help making life decisions as an adult, the family may want to consider providing support to the child after age 18 through guardianship, conservatorship, or power of attorney. Guardianship and conservatorship are more involved legal processes so the family will want to start this process six months before the child turns 18.

Guardianship: A trusted adult is court-ordered by a judge to make decisions on behalf of the individual. There are full and partial guardians. A full guardian can make decisions about all areas of an individual’s life. A partial guardian can make decisions about select areas of an individual’s life.

Conservatorship: A trusted adult is court-ordered by a judge to make decisions about financial affairs only.

Power of Attorney: Is a legal document that authorizes a trusted adult to make decisions about the individual’s property, finances, or medical care. Under a POA, the individual still retains the right to make decisions on his or her behalf.

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 the 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 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 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.

This article was originally published on MFed Inform.

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

It’s a commonly accepted perspective in the field of mental health that all behaviors have a goal. When it comes to understanding youth who are challenged with an autism spectrum disorder (ASD), the key is realizing that all behaviors represent efforts to communicate. Rigid expectations of social behaviors and decision-making based on age can interfere with supporting a person on the spectrum, especially when communication is expressed differently when compared to the general population. While the behaviors of someone on the spectrum may seem unusual or even at times disruptive, the best approach for understanding a person with autism, especially youth, is to determine the goal, how the goal is communicated through their behaviors, and the intersectionality of those behaviors with peer interaction, transitioning to adolescence and adulthood, and adapting to new environments due to a military permanent change of station (PCS) or sudden absence of a parent. Intentionally diversifying sources of support can improve outcomes for youth especially as they transition into adulthood.

Understanding Autism[1]^,[2]

Autism Spectrum Disorder (ASD) is defined as a neurological disorder that, because of its effects on brain functioning, can negatively impact daily interactions such as socializing, displaying affection, and communicating. This impact has far-reaching implications, spanning multiple domains and presenting in an unpredictable manner. The severity of the disorder is compounded by co-occurring conditions and adverse reactions to sensory stimuli, such as lighting and noise.

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) provides further clarifying terms, using two identifying categories of symptoms to provide a basis for diagnosis of autism:

• Persistent deficits exist in social communication and social interaction across multiple contexts and restricted, repetitive patterns of behaviors, interests, or activities.
• Some of the characteristics include repetitive movements and speech, inflexibility, fixated interests, and hyper-/hypo-reactivity to sensory input.

Similarities With Other Youth[3]^,[4]

Youth with autism are prone to experience the same desires for friendships and intimacy as their peers. They share the same right to have educators and family educate them on this topic. These youth will also experience peer pressure and bullying, as all youth do. Kids with ASD crave same-aged allies just like others their age. They are vulnerable to missing non-verbal cues that mask sarcasm, teasing and even malicious intent. Peers who are not on the spectrum but have demonstrated healthy social skills are ideal for helping youth with autism to communicate and understand communication.

Differences From Other Youth[5]

Understanding autism in youth is more than a simple exercise in definitions and categorizing symptoms—a concerted and diligent effort for research is needed across disciplinary domains. The CDC’s Study to Explore Early Development (SEED) has provided the most comprehensive study of ASD in the United States, examining the health, functioning, risk factors, and signs present in preschool-aged children. Such a study empowers others to support the ability of a person with autism to effectively communicate. Amid a scarcity of research exploring ASD among pre-/teens, the SEED’s usefulness has been further expanded to survey the families of 800 children between the ages of 12-16 who were a part of the initial phase of SEED. Although similarities between neurodivergent youth and neurotypical youth can easily be identified, this study shines a necessary light on the differences between adolescent cohorts.

The findings in this report reveal that adolescents with autism experience a need for greater support in the areas of physical and mental health, as well as extending the use of healthcare beyond the stage of adolescence, in contrast to peers their age.

In comparison to adolescents in the control group of this study, children with autism were 90% more likely to have co-occurring mental or physical health conditions and at the same time more than three times likely to not access appropriate health care for those needs.

Being included in general education classrooms is a boon to social competence in youth with ASD, but not a fix. Social deficits create a need for interventions that coach social skills for them, such as initiating or inviting others to play and engage, while these skills naturally occur in typically developing youth.

A peer helper can assist with bridging the gap between these differences, offering the chance for youth from both cohorts to experience and engage in friendly behavior in a variety of environments, such as classrooms, recreational areas, or after-school events.

It may be difficult for a child from either cohort to articulate the differences, but the relational tension will be present, nonetheless. Interventions should assist both children, equipping them with clearly defined choices that improve the likelihood of forming a healthy social connection between them.

Challenges for Military Families

Military sources indicate that more than 13,000 military dependents, the majority being children, have some form of autism. No matter where they go, their families will always be the immediate support system, a system vulnerable to emotions and challenges related to the difficulties of military life: a permanent change of station, frequently absent or deployed parents, changing primary care managers and parental/marital stress.

A diagnosis of ASD means that every day a caregiver must plan every activity to prevent behaviors that will likely be misunderstood by those untouched by ASD. Even when connecting the youth with an organization that can provide care and interaction outside of the home, the caregiver will need to provide specifics about their child’s needs and determine if the environment they are entering is an adequate fit. The environment should include staff trained to intervene and redirect especially by understanding what behavior that seems disruptive is trying to convey on behalf of the child. Most parents and caregivers find themselves repeatedly having to explain to other professionals why their child reacted the way they did.

Another frustrating factor that families looking for support outside of the home encounter is simply a lack of affordable and competent sites. The emotional toll on a parent or caregiver from frequently reaching a dead end can exhaust even the most resilient. The chances of finding a great fit for a youth with ASD is generally cut in half by the lack of behavior management services, the expense of the programs, and the sad reality of untrained staff.

Military families also encounter increased hardship introduced by the search for evidence-based treatment services, especially when a new duty station proves to be a disruption to receiving quality care. Not all stations have ease of access to needed services.[6] Military children and their families move every few years. These frequent changes hinder the ability to maintain secure relationships in the school setting and with each move, the rigors of advocacy for individualized services are reborn. Any family who has dealt with a military move can vouch that the process is replete with paperwork. A family who has a child with autism has their work nearly doubled. Important documents and steps to take include, but are not limited to, the most recent copy of an IEP, a current behavior plan, medical documentation, connecting with the receiving school play son, a new therapist, and finding a neighborhood accessible to community-based services.

Financial strain is another stressor faced by military families. Spousal unemployment can easily become a dynamic for a family with a child on the spectrum. It is often simpler and more cost effective to care for the child at home, especially when hours for paid time off become depleted due to frequent calls from the school for a parent to come deescalate the child.

Frequent moves, financial strain, and harried reintegration processes can mount into a tremendous pile of stress leading to feelings of isolation and marital discord in many cases. Finding and building a support system, albeit challenging, is not impossible and is worth its weight in gold. Despite all the barriers and challenges of a military lifestyle, friendships and systems that are built often turn out to be lifelong relationships. Military living means that a challenge posed for one is a challenge accepted by all.

How the MFLC Program Can Help with Communication

The Military and Family Life Counseling program supports service members, their families and survivors with confidential non-medical counseling where they are stationed. Recognizing behavior as a form of communication is a skill possessed by Military and Family Life Counselors (MFLC) counselors. MFLCs are in an excellent position to support families and schools by providing referrals and psychoeducation about the need for behavior to be interpreted rather than reacted to.

Anxiety for anyone is an emotion that disables executive functioning. MFLCs can equip staff and family with language that prevents and even deescalates anxiety in youth with autism. A person with ASD may look away for a moment or two before responding to directions. Rightly interpreting this behavior can prevent the wrong reaction and a misunderstanding. A pause in responding doesn’t necessarily mean unawareness or lack of intellect—for the person with ASD, looking away may mean, I need a quick break from stimuli.

MFLCs can also help by increasing awareness of incorrect assumptions, such as the aforementioned “pause” as a lack of emotionality, and biases built into labels such as low or high functioning. MFLCs can coach staff and family to ask, “what support do you need,” rather than assuming wrongly about the support needed at any point on the spectrum.

Effective communication is essential in at least two settings: school-based and healthcare. Data show a strong correlation between time spent in general education classrooms and increased academic skills and knowledge, receipt of a high school diploma, and/or increased access to typical peers, which promotes a primary desire for youth in general: healthy social relationships. The ultimate benefit is enhanced integration in the community. Youth participation in work opportunities, paid and unpaid, during high school is also connected to better outcomes in adulthood. To get started with the MFLC program contact your installation’s Military and Family Support center.

Tips for Preventative Healthcare

The single greatest external factor in fostering support for a teen preparing to enter adulthood is preventative healthcare. While under the care of their family, youth with autism benefit from services such as the Exceptional Family Member Program (EFMP), Extension for Community Healthcare Outcomes (a virtual interdisciplinary network for providers which includes parental feedback), Tricare, and Individualized Education Plans (IEP)/504 plans. However, as discussed, youth with autism are less likely to continue healthcare into adulthood. The goal for preventative healthcare is to equip the person receiving the healthcare with an awareness of what their health can and should look like and the right to receive that care.

An ideal strategy for improving health outcomes and reducing service gaps for youth with autism involves interdisciplinary training promoting the use of evidence-based interventions. Operation Autism lists several, including the most widely used, Applied Behavioral Analysis (ABA), Picture Exchange Communication Systems (PECS), and Speech and Language Therapy (SLT) across multiple contexts. At a minimum, as recommended by the CDC, care should be timely, coordinated, and family centered. Practitioners and school administrators should encourage parents and caregivers to enroll youth early in services, such as insurance plans and residential living, that support the transition to adulthood.

According to measures included in the Health Resources and Services Administration Maternal and Child Health Bureau National Performance as reported by the CDC SEED 2 study, practitioners should ensure three elements are met when establishing a wholesome health care transition:

• The youth should spend time alone with the primary care provider,
• The PCP should actively work with the child to understand healthy living, and
• The parent should know how the child will be insured when they reach adulthood.

Conclusion

The research-to-practice gap is steadily closing with studies such as SEED and the increase of evidence-based practices (along with the collective disapproval of ineffective and harmful treatment practices). Understanding the needs of youth with autism has been difficult but is no longer the apprehensive feat it once was, and while military families with ASD may have additional stressors, there is a system of support available to help navigate these challenges. Ultimately, communication is a gift for all human beings to use in the quest to understand one another, and establishing healthy communication with youth with autism is not simply a matter of teaching them what to say but it largely entails the ability to interpret what they are already saying.

This article was originally published on MFed Inform.

[1] Low Functioning to High Functioning Autism: A Prescriptive Model for Counselors Working With Children Across the Spectrum. Katherine Feather, 2016. https://www.counseling.org/docs/default-source/vistas/article_11d2bf24f16116603abcacff0000bee5e7.pdf?sfvrsn=4ca9442c_4

[2] Operation Autism. (n.d.). Life Journey through Autism: A Guide for Military Families

[3] Autism Speaks. 2013. Leading The Way: Autism Friendly Youth Organizations. https://www.autismspeaks.org/tool-kit/leading-way-autism-friendly-youth-organizations

[4] https://www.plannedparenthood.org/planned-parenthood-massachusetts/local-training-education/parent-buzz-newsletter/parent-buzz-e-newsletters/sexuality-education-youth-autism-spectrum

[5] Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood — Four U.S. Sites, 2018–2020. Powell PS, Pazol K, Wiggins LD, et al. https://www.cdc.gov/ncbddd/autism/autism-spectrum-disorder-in-teenagers-adults.html

[6] Toward Innovative, Cost-effective, and Systemic Solutions to Improve Outcomes and Well-being of Military Families Affected by Autism Spectrum Disorder. 2015. Klin et al. https://pubmed.ncbi.nlm.nih.gov/25745376/

“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 and 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 she 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, and 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 stated, “If you met one person with Autism, you have met one person with Autism.” He is an author, a professor of Education, and 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 the 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 was diagnosed with an 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 is reported to be diagnosed with Autism, the statistics are not entirely clear for military children. In 2020, TRICARE reported that 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 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 of 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 frustration levels were also reported due to a lack of satisfaction with the quality of the care their child receives at their new provider. Families not only geographically isolated from their previous providers, but military parents with children with autism reported higher stress levels 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 in their new hometown and school. Autistic children innately struggle with making social connections, making it harder 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

As mission partners, Magellan Federal Military & Family Life Counselors (MFLCs) 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 before moving. 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 support. Utilizing the current Military Family Life Counseling network of counselors, resource lists can be maintained locally and can be shared 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 the 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 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 to experience loneliness, academic struggle, and aggression (Walton & Ingersoll, 2015).  MFLCs can create spaces of peer support in the groups.

In April, we celebrate the 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, 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.