Autism Spectrum Disorder and its Impact

Autism. In the year 2020, in the United States of America, it would probably be difficult to find a person who has never heard of autism or is not aware of someone whose life has been significantly impacted by autism.

Autism is not a single disorder. It is more accurately referred to as Autism Spectrum Disorder (ASD) because it is a closely related group of disorders. ASD is defined by the National Institute of Neurologic Disorders and Stroke as a group of complex neurodevelopmental disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning. Autism spectrum disorder is a developmental disorder of the brain that is found in people of all racial, ethnic and socioeconomic groups. It is 4 times more common among boys than girls. In 2018, The Center for Disease Control and Prevention (CDC) reported the prevalence of ASD among 11 surveillance sites to be one in 59 children. This marks a 15 percent increase from their report delivered two years earlier and is the highest prevalence recorded since the CDC began tracking ASD in the year 2000. Rates have been rising since the 1960’s however researchers suggest there may be other contributing factors to this rise such as increased awareness, screening, diagnostic services, treatment and intervention services, better documentation of ASD behaviors and changes in diagnostic criteria.

The Signs and Symptoms of Autism Spectrum Disorders can vary greatly. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives, others need less. The diagnostic criteria for Autism Spectrum Disorder in the DSM-5 is the standard reference that healthcare providers use to diagnose autism. Its most recent update occurred in 2013. Criteria include:

• persistent deficits in social communication/ interaction
• restricted, repetitive patterns of behavior

Symptoms must be present in the early developmental period (prior to age 3), cause clinically significant impairment and are not better explained by intellectual disability. Sensory issues are a symptom that was added under the category of restricted/ repetitive behavior category. This includes increased or decreased reactivity to stimuli (lights, sounds, taste, touch) or unusual interests in stimuli (staring at lights, spinning objects).

Specialized healthcare providers diagnose autism using a checklist of criteria in the areas of social communication challenges and restricted, repetitive behaviors derived from the DSM-5. They also assess the severity of the symptom which is reflected in how much support a person needs for daily function. In 2013, the American Psychiatric Association merged several distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

• Autistic disorder. This is what most people think of when they hear the word "autism." It involves a triad of impairments – in social interaction, in communication and the use of language, and in limited imagination as reflected in restricted, repetitive and stereotyped patterns of behavior and activities. The nature of the restricted, repetitive behavior varies depending on developmental level as well as degree of disability, from stereotyped motor movements, such as hand-flapping, to behavior such as lining up or ordering objects, to preoccupation with a certain area of interest. Across different levels of ability and autism severity, there is often an insistence on sameness and a tendency for upset, sometimes extreme, when a person with autism encounters an unwelcome change to a pattern or routine.
• Asperger's syndrome. Typical to strong verbal skills and intellectual ability distinguish Asperger syndrome from other types of autism. Asperger syndrome generally involves difficulty with social interaction, restricted interests, desire for sameness and distinctive strengths. Strengths can include remarkable focus and persistence, aptitude for recognizing patterns and attention to detail. Challenges can include hypersensitivities (to light, sounds, tastes), difficulty with give and take conversation, difficulty with nonverbal conversation skills (distance, loudness, tone), uncoordinated movements or clumsiness and anxiety/depression.
• Pervasive developmental disorder-not otherwise specified (PDD-NOS). A relatively new diagnosis dating back only about 15 years, some developmental health professionals refer to PDD-NOS as “subthreshold autism." In other words, it’s the diagnosis they use for someone who has some but not all characteristics of autism or who has relatively mild symptoms. For instance, a person may have significant autism symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restricted, repetitive behaviors. Individuals with PDD-NOS vary widely in their strengths and challenges.

Rett syndrome previously fell under the autism spectrum however research has determined that Rett syndrome is a rare neurological genetic disorder. It no longer falls under ASD guidelines. Rett syndrome affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

Specialized healthcare providers that diagnose autism spectrum disorder also assign a level 1-3 which reflects the severity of symptoms.

• Level 1: Requiring support. A person with level 1 autism may have difficulties in social situations. Level 1 is the least severe autism diagnosis. People in this category have social difficulties that require some support.
• Level 2: Requiring substantial support. Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others.
• Level 3: Requiring very substantial support. This is the most severe level of autism. According to the DSM-5, those at this level require very substantial support. In addition to a more severe lack of communication skills, people with level 3 autism also display repetitive or restrictive behaviors.

First described over 75 years ago by Leo Kanner at Johns Hopkins Hospital, the evolution of this diagnosis has, at times, caused significant confusion and uncertainty among those affected. Published descriptions of behavior resembling autism date back to the 18th century and are included in the biographies of such well known people as Albert Einstein and Charles Darwin. Initial attempts to assign a cause of autism resulted in Dr. Bruno Bettleheim suggesting that detached, uncaring mothers caused psychologically disturbed children to develop autism, a belief that most doctors held through the 1950’s and 60’s. This theory has long since been unequivocally disproved. But because ASD is an extremely complex disorder and research has been historically underfunded, our understanding of the causes of autism remains incomplete. Research in the neurosciences and other scientific fields has revealed that it is likely caused by multiple gene changes and influenced by environmental factors. Environmental factors alone are unlikely to cause autism, but rather appear to increase a child’s risk of developing autism when combined with genetic factors. For further information on this topic please refer to the National Institute of Environmental Health Science’s page on Autism.

Autism Spectrum Disorder doesn’t affect just some of us, it affects all of us. With a rising rate of incidence, whether directly or indirectly impacted, we all should have a basic understanding of the challenges this diagnosis implies. From increased awareness and attention flows increased hope and improvement in quality of life for all of those affected. In fact, research has already shown that early intervention leads to positive outcomes later in life for people with autism. The key is to Learn the Signs of autism spectrum disorder and Act Early.