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Defining and Classifying Autism Spectrum Disorder: A Guide for Caregivers

Until 2013, autism was treated under a handful of labels, such as Asperger’s Syndrome and Pervasive Developmental Disorder, which are no longer in use. It was the publication of the DSM-5, the most recent edition of the diagnostic handbook trusted by health professionals around the world, that merged these various diagnoses together into what is now known as Autism Spectrum Disorder (ASD). A single diagnosis for autism places greater focus on accessing resources than the classification of symptoms.

While there is no single known cause of the disorder, people with ASD generally experience difficulties in communication and behavior due to some level of abnormality in brain structure or function. On an individual basis, this could manifest as anything from a lack of eye contact and trouble reading facial expressions to requiring assistance for daily actives at the severe end of the spectrum.

If you’re caring for someone with ASD, read on to become familiar with the terms you’ll come across while seeking to qualify for certain health benefits or navigate the services that schools and government entities offer.

What Kind of Disability is ASD?

ASD is defined by the medical community as a developmental disability that causes social and behavioral challenges. It is not a learning disability.

Learning disabilities such as dyslexia or Attention Deficit/Hyperactivity Disorder (ADHD) are narrower in scope, affecting the ability to develop reading, writing, math, or other academic skills. ASD, on the other hand, affects communication, social skills, and often sensory processing.

Being on the spectrum does affect learning, sometimes in ways that are resemble learning disabilities, and children with ASD are often eligible for special education services under the Individuals with Disabilities Act (IDEA). It’s also possible for someone to have a learning disability in addition to ASD. Regardless, these are two different types of disability that can occur separately.

What are the Official Criteria for ASD?

Health professionals in the US and around the world rely on the DSM-5 to provide standardized diagnostic criteria for ASD. An ASD diagnosis begins with observations of persistent deficits in the following:

  • Social-emotional reciprocity, referring to the ability to approach and respond to others in social interactions
  • Deficits in nonverbal communicative behaviors, ranging from too much or too little eye contact to a total absence of facial expressions and gestures
  • Deficits in developing, maintaining, and understanding relationships

In addition to this, a person must display at least two out of four types of restrictive, repetitive behaviors to be diagnosed with ASD:

  • Repetitive motor movements, use of objects, or speech
  • Strict adherence to routines, with extreme distress at small changes
  • Highly restricted interests with are intensely focused upon
  • Hyper- or hypo-reactivity to sensory input

ASD might be diagnosed for young children during developmental screenings conducted in health care, school, or community settings by a variety of clinical professionals. It can sometimes be detected in infants as young as nine months old, but by 2 years of age a specialist should be able to provide a reliable diagnosis.

Early intervention for ASD has been shown to make a significant impact on a child’s ability to make friends and adapt to different aspects of society later in life. This is why pediatric and primary care physicians who are in contact with children before they reach school age are in an especially favorable position to screen for ASD. If any concerns arise during a developmental screening, a primary care physician may refer a child to an early intervention specialist if they are younger than 3 years old, or a special education program if they are older.

Autism Disability Care and Coverage

The U.S. Social Security Administration (SSA) recognizes ASD as a potentially disabling condition that may qualify children or adults for social security benefits. To identify who is eligible, the SSA maintains a Listing of Impairments that contains the criteria used to assess disability claims for different conditions. ASD is listed twice, with separate criteria for children and adults:

  • Childhood Autism. Children with autism need a diagnosis of ASD to qualify for benefits. They also have to demonstrate a certain level of impairment through their behavior. For Infants and toddlers under the age of three, this means must demonstrate no more than half the age-appropriate level of fine motor skills, cognitive function, and social function. Children from the ages of 3-18 should also demonstrate a noticeable impairment for these categories, with an additional lack of ability to focus and persist at tasks.
  • Adult Autism. The SSA does not list specific requirements for the level of disability that qualifies adults with ASD for benefits. Disability claim should be made based on the impairments that affect an adult’s ability to function independently and gain employment.

People with ASD could qualify for two disability programs: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Children who qualify are entitled to SSI, while adults may be enrolled in both SSI and SSDI. You can learn more about what each program entails and how to apply on the SSA website.

Despite national assistance programs and established criteria for an ASD diagnosis, where a person lives has been shown to have a significant impact on their cost of care, coverage options, and the educational programs they have access to. Research points to a wide range in the prevalence of ASD diagnosis between states, with a higher prevalence being linked to higher education-related spending.

It helps to familiarize yourself with standard terms and criteria surrounding ASD to make the most of what services are available for your loved one and provide them with the best possible care at any stage of disability.

 

Need help caring for a loved one with ASD? Learn more about Seniorlink’s coaching and support program for caregivers of Medicaid-eligible friends and family members.


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