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.

Autism spectrum disorder (ASD) is a group of neurological conditions that affect brain development and can lead to challenges with social skills, language and communication, learning and behavior. In the United States, 1 in 44 children is diagnosed with ASD, and two percent of adults are estimated to have ASD.

Autism Awareness Month

Autism Awareness Month, observed annually in April, evolved from the Autism Society of America’s first National Autistic Children’s Week in 1972 and the United Nation’s official observance of World Autism Awareness Day on April 2, which highlight the need to improve the quality of life of those with ASD so they can lead full and meaningful lives and be an integral part of society.

How does autism awareness help individuals with ASD?

Autism awareness is knowing an individual has ASD and recognizing the signs and symptoms, such as social communication challenges, restricted interests and repetitive behaviors. Awareness can lead to acceptance and help with:

• Improved inclusion for people with autism
• Decreased bullying and exclusion
• Greater support in schools, at home, etc.
• A better understanding of ASD in communities
• Better integration of people with ASD into communities, jobs, etc.

Autism Acceptance Month

Today, Autism Awareness Month has evolved into Autism Acceptance Month. Organized by Paula C. Durbin-Westby, an autistic disability rights activist, Autism Acceptance Day was first observed on April 1, 2011 as a way to counteract negative images of autism prevalent in many autism “awareness” media pieces. Autism Acceptance Day and Autism Acceptance Month quickly became popular in the autistic community. In 2021, the Autism Society formally adopted the name Autism Acceptance Month to foster acceptance and ignite positive change in the lives of those with autism and their families.

How does autism acceptance help individuals with ASD?

Autism acceptance means moving past surface impressions; including individuals with ASD in your activities; and helping them to develop and thrive in the community, and connect with others.
With acceptance from others, individuals with ASD have an easier time navigating life’s everyday challenges without the stress of being judged and ridiculed. Autism acceptance can provide individuals who have ASD:

• Adequate validation of their condition and emotions
• Improved self-acceptance, confidence, and mental health
• Better relationships with peers
• Increased quality of everyday life

This increased sense of self-acceptance and compassion will give individuals with autism more confidence to interact openly with peers, take part in group activities and try new things.

How can I practice autism acceptance and inclusion?

We can all take actionable steps that encourage acceptance and inclusion of individuals with ASD in our communities.

• Diversify your child’s bookshelf. Select books with characters of varying abilities, such as ASD. Reading is an excellent way to engage your child in conversations about acceptance and inclusion of differences from a very young age. Three books that focus specifically on ASD are:
  • A Friend for Henry by Jenn Bailey–This heartfelt story from the perspective of a boy on the autism spectrum who is on the lookout for a friend who shares, listens, and maybe even likes things to stay the same and all in order, as he does, celebrates the everyday magic of friendship with insight and warmth.
  • A Friend Like Simon by Kate Gaynor–This story is about an autistic child who joins a “typical” classroom and faces many challenges. Young readers will learn how to be mindful of and patient with their autistic peers, while also learning about the many ways an autistic child can contribute to a friendship and community.
  • All My Stripes: A Story for Children with Autism by Shaina Rudolph and Danielle Royer–Zane the zebra has autism, and he is worried that his friends and classmates will make fun of his stripes, which make him different. As Zane learns having autism is one of the many things that actually makes him special, your child will relate to Zane and realize they, too, have plenty to be proud of.
• Expand your circle. Expanding your family’s network of friendships and activities to include individuals with different abilities, such as ASD, can provide opportunities for all to connect with and learn from others.
• Focus on strengths, not just challenges. Many individuals with ASD exhibit highly focused interests, such as technology or animals. Inviting them to participate in activities or groups that involve their interests creates pathways for individuals with ASD to form friendships. Focusing on the unique abilities of individuals with ASD strengthens their sense of self and achievement.

How can I learn more about ASD?

You can find free resources that increase awareness, celebrate differences and support inclusion on our Autism Awareness website, including a recording of the Magellan Healthcare and Kyo webinar, “What is Applied Behavior Analysis (ABA) and how can it help my family?”

SOURCES:

• Applied Behavioral Analysis Programs Guide
• Autism Center for Kids
• Autistic Self Advocacy Network
• Centers for Disease Control and Prevention 
• Chronicle Books
• Dictionary.com
• National Today
• Texas Children’s Hospital
• United Nations
• USA Today

According to the CDC, 1 in 54[1] children is diagnosed with autism spectrum disorder (ASD), with some states reporting 1 in 32[2] children receiving a diagnosis.¹ One of the most common treatments for ASD is Applied Behavior Analysis (ABA), a therapeutic intervention that helps individuals with autism:

• Improve communication, social, daily living and motor skills
• Maintain positive behaviors
• Transfer skills and behavior from one situation to another

Because ABA is a newer treatment than psychotherapy and other therapies, limited academic literature exists to support providers in effective decision-making for intensity and length of care. In addition, treatment plans are individualized and require extensive monitoring with heavy reliance on caregivers, nearly 50%[3] of whom need help managing emotional and physical stress. This makes it difficult for families to gauge treatment effectiveness and contributes to the rising costs of mandated ASD treatment. In fact, according to the CDC, in addition to medical costs, intensive behavioral interventions for children with autism cost $40,000 to $60,000 per child per year.[4]

A shift from fee-for-service models, in which ABA providers are compensated for each procedure, test, treatment, etc. performed, regardless of whether they lead to better outcomes for the patient, to value-based care models that link payments for the provision of services to the quality of services provided and reward providers for efficiency and effectiveness, can help address these challenges and deliver stronger clinical outcomes when the models:

• Emphasize efficacy—Value-based ABA care models should define benchmarks that determine when the maximum benefit of ABA services has been achieved, measure progress against the benchmarks and empower providers in the decision-making process to ensure that intended outcomes are achieved during ABA treatment and beyond.
• Improve member engagement—It is essential that providers and caregivers work together as a team. By participating in regular discussions with providers on progress trends barriers, and ongoing assessment, caregivers are empowered to understand the overall direction and impact of ABA services and how their active participation in their child’s treatment planning and delivery has a strong impact on outcomes.
• Drive-data-informed decision-making—From the onset of ABA services, behavior analysts should set targets or specific behaviors selected for change based on skills assessments. Progress toward these targets should be monitored, analyzed for trends, and continuously discussed with caregivers. This high-engagement, data-informed process drives decisions on the next steps for ABA services, including whether to continue or slowly reduce the number of therapy hours, and enables providers and caregivers to select and use clinical services that will meet children’s needs.

Visit here to learn about Magellan Healthcare’s value-based collaboration with Invo Healthcare to define standards of care for children with ASD undergoing ABA treatment and improve ABA outcome

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

[2]https://worldpopulationreview.com/state-rankings/autism-rates-by-state

[3]https://www.workforce.com/news/working-parents-finding-support-for-their-special-needs-children

[4]https://www.autismspeaks.org/financial-resources-autism-help

About 1 in 54 children in the U.S. has been diagnosed with autism spectrum disorder (ASD), according to estimates from the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.[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 tips to help you and ensure your child lives their best life.

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.

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.

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.

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.

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.

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.

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.

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.

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 Awareness website here for free resources that increase awareness, celebrate differences and support inclusion.

Read more Autism content from Magellan Health Insights

[1] https://www.appliedbehavioranalysisedu.org/top-10-awesome-things-about-being-on-the-autism-spectrum/

Every April, we recognize National Autism Awareness Month, which focuses on spreading awareness, improving understanding and promoting acceptance of autism spectrum disorder (ASD). Most of us are aware of the challenges families impacted by ASD may face throughout their lives. Research studies, media reports, social media and events help us keep up to date. But do we really think about the many amazing positive qualities people with ASD possess?

Traits that make people with Autism Spectrum Disorder awesome people, friends and coworkers

• Creative—People on the spectrum look at the world differently and process information in a unique way, making them independent and creative thinkers who can visualize solutions to problems that others may not see.
• Detail-oriented—People on the spectrum are highly attuned to detail. Little things that most of us might overlook, such as spelling or punctuation, stand out to individuals on the spectrum. They take note of specific details such as colors and names and remember directions.
• Honest—Many people with ASD are often black-and-white thinkers, so it makes no sense to them to lie. They are not afraid to tell us what they really think, but they tell the truth quite openly and accurately reflect their feelings, whether positive or negative.
• Non-judgmental—Because of their black-and-white thinking, people with ASD rarely compare others to any set of standards or expectations. Therefore, they are more likely to accept differences, see us as we are and not expect us to change.
• Passionate—Many people with ASD have a wide range of interests and are extremely impassioned about the things, ideas and people in their lives. They pursue interests with 100% of their energy and research obsessively until they have a deep understanding of the subject. They spend the time, energy and imagination needed to really master their interests and stick with things through difficulties and frustration.
• Reliable—People with ASD appreciate routines. Once a routine or rule is set, you can rely on them to follow it precisely. If it is on the calendar, you can be sure they will be there and arrive on time.

Keeping an eye on the positive characteristics of people with ASD is key to promoting wider acceptance. Help your family, friends and others learn why they are amazing and special by sharing this blog post.

To learn more about Magellan Healthcare’s work with Autism Spectrum Disorder, click here. 

Sources:            

• https://www.appliedbehavioranalysisedu.org/top-10-awesome-things-about-being-on-the-autism-spectrum/
• https://autismawarenesscentre.com/the-positives-of-autism/

April is Autism Awareness Month and another opportunity to promote inclusion and self-determination for those on the autism spectrum. Like many impacted by this challenging disorder, my family has our own story and my hope is that by sharing it, we can help others.

Our now nine year old son, Vaughn, was diagnosed with autism at 18 months. A mere 13 months younger than his typically-developing sister, my husband and I could tell that something was not quite right with our son. Vaughn wasn’t walking or talking and was overly-obsessed with anything that spun. He wouldn’t make eye contact with people and wasn’t motivated to engage with our family. It was both scary and heartbreaking and we knew we needed to do something. Little did we know how much our next steps would change, and continue to shape, our lives.

Artwork by Vaughn

The day we were given the diagnosis was one of the hardest days of my life. I worried about my son’s future and whether he would ever learn to communicate his needs, make friends or even live independently. As a mother, you want those things for your children and you worry when the future path isn’t clear. Thankfully my husband and I parked our tears and bonded together to do everything we could to change the trajectory of Vaughn’s life. We quickly immersed ourselves in learning all we could about this complex and wide spectrum disorder, discovering just how important it was to intervene early and often for the biggest impact. And we did just that; fully determined, we dove in and never looked back.

While most children were enjoying the freedoms of exploration and play, Vaughn was working as many as 35 hours a week for years on things that would seem so simple to some—things like learning how to speak and shape sounds, how to play appropriately with toys and even how to properly engage other children and people. My husband and I often marveled at how hard Vaughn worked and how little he complained. However, as parents, we often struggled to strike the balance between being therapists consistently executing interventions and being just a regular mom and a dad to both of our children.

Fortunately, and with the help of many wonderful people and organizations, we were able to effectively navigate the system and provide Vaughn with comprehensive services and support, some of which he still receives today. Vaughn is in a typical classroom, participating in typical activities and has many friends. He is a talented artist with a creativity and sense of design well beyond his years. And, most importantly, he has a loving and supportive big sister that celebrates his success, despite the years of being in her brother’s autism shadow. We are fortunate.

In an effort to honor those that have helped us and to give back to our community, I have joined the board of directors at Arizona Autism United as they have played, and continue to play, a key role in Vaughn’s treatment and success. It is my goal to do whatever I can to support this organization that has done so much for my family and share what we have learned to help other families struggling with autism in our community.

I’ve said it a million times, and will say it again. If I could go back in time to the day Vaughn was diagnosed and change things, I wouldn’t. He is such a special and creative person that has positively shaped how our family sees the world. Our journey has made us who we are and we are grateful for the lessons we’ve learned and the people we’ve met along the way. This Autism Awareness Month, take the time to learn more about autism and what you might be able to do to help those in your own community.

April marks Autism Awareness Month, which focuses on increasing awareness and understanding of autism spectrum disorders (ASD). People with ASD may learn, communicate, and behave in ways that are different from others. Learn more about ASD below, and click on our tip sheets to find additional resources, including ways that you can help support others around you who may be impacted by ASD.

1. In the United States, 1 in 68 children is diagnosed with autism. Boys are 4.5 times more likely to be identified with ASD than girls.^[1]
2. Signs and symptoms of autism often start between 12 and 18 months of age. Sometimes a child will develop normally until the second year of life, then develop autism. ^[2]
3. Some people have had concerns that autism is caused by childhood vaccinations. However, extensive research over the past twenty years has shown there is no link between vaccinations, or the ingredients in vaccinations, and ASD. ^[3]
4. Children with ASD are prone to wandering or bolting from a safe, supervised place. This common behavior can cause great stress for families. ^[4]
5. People with ASD often suffer from other medical conditions which may include allergies, asthma, epilepsy, digestive disorders, obesity, persistent viral infections, sleeping disorders, and more. ^[5]
6. While many children with autism also have intellectual disabilities, almost half (about 44 percent) have average to above average intellectual ability. ^[6]
7. Although there is no cure for ASD, there are early intervention services to help children from birth to three years old learn to talk, walk, and interact socially with others. ^[7]
8. Many children with ASD are not diagnosed as early as they could be. The American Academy of Pediatrics recommends autism screening for all children twice before 24 months. ^[8]
9. Children with special needs, including ASD, may be eligible for treatment services under state and federal laws including the Individuals with Disabilities Education Act (IDEA). ^[7]
10. Autism itself does not affect life expectancy. However, studies show that the mortality risk among people with autism is double that of the general population, largely due to accidents. ^[9]

There are many resources to turn to if you are looking to learn more about Autism spectrum disorder.  Begin your search here:

Understanding Autism Spectrum Disorder (ASD)

How to Support Parents of Children with Autism

Resources for Autism Spectrum Disorder (ASD)

Sources

1. Centers for Disease Control and Prevention: Prevalence and Characteristics of Autism Spectrum Disorder Among Children
2. Autism Speaks: FAQ
3. Center for Disease Control and Prevention: Vaccines Do Not Cause Autism
4. Autism Speaks: Autism Wandering
5. National Autism Association: Autism Fact Sheet
6. Center for Disease Control and Prevention: Data & Statistics
7. Center for Disease Control and Prevention: Facts About ASD
8. American Academy of Pediatrics: Autism
9. Autism Speaks: Mortality and Cause of Death in Autism Spectrum Disorders