By: Trang Peltier
Disclaimer: Other than the sourced information, this article is based on my personal experiences and impressions in raising my autistic child and should not be treated as generally applicable to the Autism community or construed as legal advice.
Disability Law and Autism
April is designated as “Autism Awareness Month.” While the idea is to promote public awareness of autism, it is more often a reminder for those of us who live with ASD of the perception and challenges met from society. Every year, we are confronted with an array of well-meaning advertisements that may portray a child who is nonverbal, avoids eye contact or has hands over ears to shut out noises. This daily attention can feel overwhelming over a month’s time.
According to the American Psychiatric Association, ASD is “a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior.” It is considered a spectrum disorder because individuals exhibit different degrees of impairment and there is no one size fits all treatment. Perhaps the most important thing to remember about ASD is that the set of traits is unique to the individual. You meet one person with autism, you have met one person with autism.
ASD is not a disease, but a form of neurological difference or neurodiversity that presents “normal variations in brain development.” It is not something to be cured but understood and supported as it is becoming more commonly reported. The Centers for Disease Control and Prevention estimated approximately one in 44 children aged eight years old were diagnosed with ASD in 2018. The numbers could skew higher as this only represents those who received a diagnosis.
Some ASD individuals may exhibit behaviors that are often misunderstood. Attributes that can suggest an ASD diagnosis typically include nonverbal communication or delayed speech, aversion to eye contact, “echolalia” or repetitive speech, fixation on a singular object or idea to the exclusion of others, sensory objections/hypersensitivity to environmental cues and need for routine. ASD is considered an “invisible disability” as the “nature of development and sensory issues” cannot be seen but may manifest itself in behaviors that may be considered inappropriate. Because the autistic person does not look physically disabled, such behavior can be misunderstood as lack of self-control or attributed to poor parenting. This may lead to unkind reactions such as social disapproval and avoidance from unaware observers and bullying from peers. It is daunting and repetitive to try to explain to strangers that one’s child is autistic to justify the behavior. Over time, those living with ASD individuals may put up walls and intentionally avoid social interactions to protect their loved ones and themselves from scrutiny.
ASD is also invisible because an unaware observer does not see how much more effort it takes the individual to process information and then communicate it to others. Sometimes, the individual has so much information that it cannot be expressed fast enough. This may lead to sensory overload, hurried speech, frustration, and a need for self-regulation. To the unknowing observer (usually peers), this behavior can appear awkward and cause aversion. Further, many may not realize neurodivergent individuals have to make more of an effort to socialize with their peers due to the inability to interpret facial expressions and tone. Socialization attempts that are not received as intended may lead to self-isolation and consequently, make the autistic person appear less approachable altogether.
Federal Legal Protections
It is imperative to obtain screening as those who exhibit ASD traits, but do not have an official diagnosis, will not receive the support to which he or she is legally entitled or needs.
In 1975, the Education for All Handicapped Children Act (EHA) was enacted to ensure children with disabilities were granted access to education and learning opportunities. In 1990, the EHA was renamed the Individuals with Disabilities Education Act (IDEA) and added autism to its categories of protected individuals. Under the IDEA, qualified students primary through secondary school levels may receive an Individualized Education Program (IEP) or a 504 Plan for academic adjustments. Education needs are assessed, and schools must provide reasonable services and accommodations identified to support those needs. The IDEA does not apply to postsecondary education.
The American with Disabilities Act of 1990 (ADA) is a federal law that ensures equal opportunities and reasonable accommodations are afforded to people with defined disabilities. Many individuals diagnosed with autism are substantially limited in one or more major life activities, which entitle them to ADA protection against discrimination in public accommodations and employment opportunities. According to the US Department of Education, virtually every school district (elementary and secondary schools) and postsecondary school are subject to Section 504 of the Rehabilitation Act of 1973 and/or Title II of the ADA. These laws, which cover recipients of federal financial assistance and providers of state and local services, prohibit discrimination based on disability and require appropriate academic adjustments be provided to eligible individuals.
The Exceptional Family Member Programs (EFMP) provide military-wide support to dependent members with special needs, including assistance with transition to adulthood. This gives members access to medical and educational services, expert consultation, and community resources. There is an EFMP Family Support Center on every installation. Enrollment is mandatory to access services.
Those enrolled in the EFMP may be eligible for financial assistance through Tricare’s Extended Care Health Option (ECHO). ECHO provides members with a more integrated set of services and supplies such as training, rehabilitation, special education, technological devices, and home health care. Tricare also has a list of services it generally covers for beneficiaries who are diagnosed with ASD.
Additionally, the Department of Defense has identified the Autism Research Program (ARP) as an area of anticipated funding opportunity for the 2022 Fiscal Year through Congressionally Directed Medical Research Programs (CDMRP):
Through the program’s areas of interest, the Autism Research Program focuses on ways to improve diagnosis, treatment, and studying psychosocial factors for affecting key lifetime transitions to independence and a better life for those with autism and their families.
Uniquely, the CDMRP combines scientific research with input from ASD military families to better serve the impacted communities. With such dedicated research, there is hope that individuals with ASD will be better understood and more effectively accommodated.
Semantics Matter in Promoting Diversity and Inclusion
However well-intended, words and the perceived meanings matter. A lot of the confusion, aversion, and negative attitude toward ASD may be due to the way it has always been described. Autism is labeled a “disorder,” which inaccurately suggests a disease or something contagious. Instead, the “D” more aptly describes a “difference.” It is a neurological variance, a different way of thinking that should be understood and nurtured rather than something to be cured. True diversity of thoughts and ideas is only possible with inclusion of the autism community.
Likewise, the word “awareness” in the usual April autism campaigns suggests a condition to be feared or avoided. Perhaps the perception will become more positive by simply changing how we approach and describe autism. Organizations like the Autism Society have renamed April as “Autism Acceptance Month” (#CelebrateDifferences). This change advocates for a more inclusive society wherein neurodiverse individuals will be respected, supported and therefore, empowered to enjoy a full and dignified life. Autism acceptance “also encourages us to celebrate autistic individuals just as they are and learn to be more accommodating to their behaviors and needs.”
Trang T. Peltier, J.D.
Trang has a background in labor and employment litigation and Human Resources consulting. She is licensed to practice law in Texas and Colorado and currently resides near Colorado Springs, Colorado.